Category Archives: communications

#caredata, care.data, communications, confidentiality, NHSEngland, scope, scope creep

Care.data – my six month pause, anniversary round up [Part 1]

September 3, 2014 jenpersson

On the 18th February 2014, a six month pause in the rollout of care.data was announced. [1] It’s now September. Six months is up.

When will we find out what concrete improvements have been made? There are open questions on plans for the WHAT of care.data Scope and its future change management, the WHO of Data Access and Sharing and its Opt out management, the HOW of Governance & Oversight, Legislation, and the WHY – Communication of the care.data programme as a whole. And WHEN will any of this happen?

What can happen in six months?

Based on Mo Farah‘s average running speed of 21.8km/hour over The Olympic Games 10,000m gold medal winning performance, and on 12 hours a day, he could have covered about 47,000 km in that time. Once around the world, in those 180 days. With some kilometres spare margin, into the bargain.

That’s perhaps unrealistic in 180 days, but last February promises made to the public, to the Health Select Committee and Parliament were given about data sharing as both realistic, and achievable.

So what about the publicly communicated changes to the care.data rollout in the six month time frame?

The letter from Mr.Kelsey on April 14th, said they would use the six months to listen and act on the views of patients, public, GPs and stakeholders.

I’d like to address some of those views and see how they have been acted on. Here’s the best I have been able to put together of promises made, and the questions I still have, six months on.

Scope. What part of our records is included in care.data?

The truth is this should be the simplest question, but seems the hardest to answer. Scope is elusive, and shifting.

A simple description would help us understand what data will be extracted, shared and for what purpose. The public needs an at-a-glance chart to be properly informed, to distinguish between care.data, the Summary Care Record, HES/SUS and how patient data is used, by whom for what purposes. This will help patients distinguish between direct and indirect care uses. What doctors would use in the GP practice, versus researchers in a lab. It will help set expectations for Patient Online. It could help explain data use in Risk Stratification. [see care.data-info by Dr.Neil Bhatia for high level items in scope, or field name detail here p22 onwards] [11]. This lack of clarity was already identified in April 2013, point 3.3, but nothing done.

Mid-August to further complicate matters, it became apparant from published care.data advisory group minutes, that the content scope is under review and may now include sensitive data. This was met with serious concern in many quarters, not least HIV support groups, on broadening the scope of care.data extraction and access. I realised I wasn’t in the least surprised, but continue to be shocked by the disconnect between project leadership and the public.

Are the listening exercises a complete waste of time?

If people aren’t comfortable sharing basic health records, how will suggesting they share anything more sensitive be likely to encourage participation?

[The scope of how our GP part of care.data will be used is also under consideration for expansion to research – more in part two, on that.]

Scope is undefined. It will continue to ever expand as the replacement for SUS. In April, I wrote down my concerns at that time. Most of which remain unchanged.

Stephen Dorrell, MP on the 11th March in Parliament summed up nicely, why this move now to shift scope is ludicrous. If we do not have stability of scope, we cannot know to what we are consenting. This is the foundation of our patient trust.

Mr Dorrell: I am not going to comment on whether the free text data should or should not be part of the system, or on whether the safeguards are adequate. However, I agree with the hon. Lady absolutely that the one sure way of undermining public confidence in safeguards is to change those safeguards every five minutes according to whichever witness we are listening to.

If the Patients & Information Directorate at NHS England is serious about transparency, then we should be clear about all our patient data, where it comes from, where it goes to, who accesses it and why.

Data protection principle 3 requires that the minimum possible data required is extracted, not excessive. Is this being simply ignored, as inconvenient in a project which intends scope to ever accumulate as SUS replacement?

“Will NHS England prepare an at-a-glance of differences between SCR and care.data, and HES/SUS extractions and users?”

Conclusion on Scope & its Communications:

This scope clarification alone would be I believe, if well done, one of the most effective communications tools for patients to make an informed choice.

1. We need to know what parts of our personal, confidential records, sensitive or otherwise are to be extracted now.

2. How will we be informed if that scope changes in future?

3. What do we do, if we object to any of those items being included?

Before any launch of pilot or otherwise, a proper plan to ensure informed communication and choice, today and looking to future scope changes, must be clear for everyone.

What’s happened since February to the verbal agreements and promises that were made back then?

Whether in Parliament by Dan Poulter and the Secretary of State Mr.Hunt, in Select Committee Hearings, by the Patients & Information Directorate at NHS England and in patient facing hour at the mixed-subject Open Day, promises have been made, but what evidence has the public, that they are real? There has been little public communication since then.

I have read, watched or attended NHS England Board meetings, Health Select committee meetings, and read the press, media releases and social media. I’ve been to a general NHS Open Day, listened in to NHS England online events, the first HSCIC Partridge Review follow up event, and spoken to patients, public and charity groups. Had I not, I would know nothing more than I did in February which was, that something had been put on hold, about which I should have, but hadn’t, received a doordrop leaflet.

Pilot practices ‘pathfinders’ we were told will trial the extraction, in six months, then in autumn, or October 1st according to Mr.Kelsey at the Health Select Committee (extract below).

I’ve not seen anywhere yet, where these practices will be, nor that patients have been informed. The latest status I read was on EHI. In response to this lack of information, medConfidential wrote to Healthwatches and CCGs with important questions and ideas. [Well worth a read].

Scope of Access – Who will get our records and for what?

Where and to whom may our data be transferred?

As part of the what of scope, we also need clarification on the who will be in scope in which countries to access data.

“Can I confirm now, that the data connected to care.data will not be allowed outside the United Kingdom? Let me confirm that before we have further hares running.” Tim Kelsey, said at the Health Select Committee.

Since GP care.data is to be connected with HES data, and data may be linked via the Data Access Request Service (the recently renamed former HSCIC Data Linkage Service DLES) on demand;

Q. How will I know in future that there are no plans to release my data outside the UK and EU, as HES has been in the past?

As far as I have read, geographical scope is not legislated for. I would like to be pointed to this if it is.

From the Health Select Committee: Committee Room 15 : Meeting started on Tuesday 25 February at 2.29pm – Ended at 5.20pm

Mr. Tim Kelsey, National Director for Patients and Information stated: The pause was announced, precisely to address the issues.

“People are concerned about the purpose to what their data is being put.”

It’s not yet been addressed. Neither for the now, nor the future.

We need to have a robust mechanism in place for all future scope of use changes. If today I agree to have some of my data extracted used for public health research for the public good, I don’t want to find that I’ve had all my personal details including my genomic records [which personally are somewhere in my record already] spliced with Dolly the sheep research, in the hunt for a cure for arthritis five years down the line, and there’s another me living at the Roslin Institute. [I jest to exaggerate the point, not all research definitions are equal]. A yes today, cannot mean a yes for anything and everything.

The opt out term at present only allows a later ‘opt out’ to mean that data is made less identifying ‘pseudonymous’ from that request date, nothing deleted. ‘Opt out’, is not ‘get out’.

The records from before that request date, will remain clear and fully identifying for all time. So if a company requests an historical report, will our identifiable data still be included in it?

Opt out is not as simple as it sounds.

OPT OUT

The whole issue of opt out was at best an inaccurately communicated process. I believe it was misleading.

What is still wrong to my mind with this mechanism, is that there appears to be the assumption that all data may be matched and de-identified before release. That corresponds to the September 2013 NHS England Directions led by Mr. Kelsey to HSCIC saying there is “ “no need” to take into account individual objection to pseudonymous data sharing “. [2] And the patient leaflet, which was produced before any opt out changes, which stated we could object to ‘identifiable’ data sharing. That ‘identifiable’ doesn’t include all our data.

I’d like to see that clarified. Because Mr.Hunt has promised an opt out in entirety:

25th February in Parliament:

Mr.Hunt: …”we said that if we are going to use anonymised data for the benefit of scientific discovery in the NHS, people should have the right to opt out. We introduced that right and sent a leaflet to every house in the country, and it is important that we have the debate..”

“the reason why we are having the debate is that this Government decided that people should be able to opt out from having their anonymised data used for the purposes of scientific research”

Dr Julian Huppert (Cambridge) (LD): There are of course huge benefits from using properly anonymised data for research, but it is difficult to anonymise the data properly and, given how the scheme has progressed so far, there is a huge risk to public confidence. Will the Secretary of State use the current pause to work with the Information Commissioner to ensure that the data are properly anonymised and that people can have confidence in how their data will be used and how they can opt out?

Hunt: “I will do that, and NHS England was absolutely right to have a pause so that we ensure that we give people such reassurance…”

Status: the public still has no communication about any opt outs on offer or a consistent, effectively communicated method by which to request it.

Our data continues to be released regardless.

What I want to understand on opt out:

1. Can I choose to have my data used for only care, or for bona fide public health research, but not, for example, other types, such as commercial pharma marketing or data intermediaries?

2. Can I restrict the use of all my children’s data, to include all of it, including fully ‘anonymous’ data as the Secretary of State stated? Not only restricting red and amber, but all data sharing?

3. How will patients know that all of their medical data is covered by these options, not only our GP records? (For other data held see > http://www.hscic.gov.uk/datasets)

4. Will NHS staff be given the right to opt out to prevent their personal confidential data or employment data being shared as part of the workforce data set?

5. Does opt out really mean opt out – when will we see the revised definition?

6. How will objection management (storing our opt out decision) be implemented with other data sharing? (SCR, Electronic Prescription Service, OOH access, Proactive care at local level.)

7. How will objection be effectively communicated and measured?

8. Will the BMA vote [3] be ignored by the Patients & Information Directorate at NHS England? They called for an opt in system? And also for it to have the option to be used only for improving care, not commercial exploitation. They appreciate the risks of losing patient confidentiality and trust.

9. Will the views of Dr. Mike Bewick, deputy medical director at NHS England, also be ignored, who said parts (referring to commercial use) should be ‘opt-in’ only? [Pulse, June 2014]

10. What will ensure opt out remains more than just Mr.Hunt’s word, if it has no legislative backing?

The opt out on offer at Christmas was to restrict identifiable data sharing. There was “no need” to take into account individual objection to pseudonymous data sharing said the September 13th NHS England directions. Those NHS England Board directions from September and December 2013 are now possibly out of date, but I’d like to see new ones which replaced them, to reassure me that an opt out that we are offered, works the way I would expect.

Most importantly for me, will the opt out be given more legislative weight, Q.10? Today I have only the Secretary of State’s word that any “objection will be respected.” And as we all know, post holders come and go, a spoken agreement by one person, may not be respected by another.

**********

ACCESS

Many of the concerns around which organisations will have access to our medical records, and which were somewhat dismissed on Newsnight then, have been shown to have been legitimate concerns since:

“Access by police, sold to insurance companies, sold for commercial purposes” Newsnight, February 19th 2014

… all shown to be users of existing medical records held by the HSCIC through the Partridge Review.

Which other concerns over access were raised and have they been addressed?

Dr. Sarah Wollaston MP, then member, now Chair, of the Health Select Committee raised the concerns of many when she asked whether other Government Departments may share care.data. Specifically she asked Mr.Kelsey,

“are you going to have a clear concrete offer to the public at the end of the six-month delay as to how these requests will be handled […] see if their data is going to be accessed by DWP […]?”

I believe this is still more than a very valid and open question, particularly with reference to the December 2013 Admin Data Task Force which was exploring a ‘proof of concept’ to link DWP [6] and Department of Health data:

“Primary and Secondary Care interventions with DWP over a six year period.”

At the Health Select Committee evidence session, Mr. Kelsey and Mr. Jones did not give a straight yes/no answer to the question.

Personally I believe it would be clearly possible that DWP administering social care or welfare payments will make a case under ‘health and social care’. Unless I see it in legislation that DWP will not have access care.data or other HSCIC held data, I personally will assume that it is going to, and may have already especially given the ‘primary and secondary linking’ pilot listed above.

What about other government departments access to health data?

A group met for the event ‘Sharing Government Administrative Data: new research opportunities’: strategic meeting on 14 July 2014, at the Wellcome Trust, London [4] – at which both care.data and DWP data had their own agenda slots.

The DWP holds other departments’ data and is “open to acting a hub.” July 2014 [7]

The Cabinet Office presenter included suggestions UK legislation [9] may change to enable all departments (excluding NHS) to share data, and the ADT recommended that new ‘Data Sharing” legislation should be put forward in the next [Parliamentary] term.

1. Since HSCIC is an ALB and not NHS, are they included in this plan to broaden sharing across government departments?

2. Will the care.data addendum of September 2013 be amended to show the public that those listed then, are no longer considered appropriate users?

3. Will Mr.Kelsey now be able to answer Dr.Wollaston MP’s question regards DWP with a yes / no answer?

Think tanks, intermediaries and for the purposes of actuarial refinement were included in documents at the time, which suggested that DAAG alone in future, would review applications.

The DAAG is still called the DAAG and appears to have gone from 4 to 6 members. The Data Access Advisory Group (DAAG), hosted by the Health and Social Care Information Centre (HSCIC), considers applications for sensitive data made to the HSCIC’s Data Access Request Service.

Three key issues remain unclear to me on recent Data Release governance at DAAG:

1. Free text access and 2. Commercial use 3. Third Party use

The July 2014 DAAG approved free text release of data for CSUs on a conditional cleansed basis, and for Civil Eyes with a caveat letter to say it shouldn’t be used for any ‘additional commercial use.’ It either is or isn’t commercial I think this is fudging the edges of purpose and commercial use, and precisely why the lack of defined scope use undermines trust that data will be used only for proper purposes and in the definition of the Care Act.

Free text is a concern raised on a number of occasions in Parliament and Health Select Committee. On the HSCIC website it says, none will be collected in future for care.data. How is it now approved for release, if it has not already been collected in the past – in HES? So it would appear, free text has already been extracted and is being released. How are we to trust it will not be the case for care.data?

****

In summary: after six months pause, it remains unclear what exactly is in scope, to whom will it be released. We are still not entirely clear who will have access to what data, and why.

In part two I’ll look in brief at what legislative changes, both in the UK and wider EU may influence care.data and wider health data sharing. Plus some status updates on Research seeking approval, Changes to Oversight & Governance and Communications.

But to wrap up here, the care.data question asked in Leicestershire on the NHS England Open Day on June 17th, still sums up for me, much public feeling:

“Are we saying there will be only clinical use of the data – no marketing, no insurance, no profit making? This is our data.”

That commercial use, the concept that you are exploiting the knowledge of our vulnerability or illness, in commercial data mining, is still the largest open question, and largest barrier to public support I foresee. ‘Will the Care Act really help us with that?’ I ask in my next post.

MedConfidential have released their technical recommendations on safe settings access to data. Their analogy struck me again, as to how important it is that the use of data is seen by the users, as a collective.

Any pollution in the collective pool, will contaminate the data flow for all.

I believe the HSCIC, NHS England Patients & Information Directorate, the Department of Health need to accept that the continued access to patient data by commercial data intermediaries is going to do that. Either those users, some of whom are young and inexperienced commercial companies, need to be excluded, or to be permitted very stringent uses of data without commercial re-use licenses.

The commercial intermediaries still need to be told, don’t pee in the pool. It spoils it, for everyone else.

I’ll leave you with a thought on that, from Martin Collignon, Industry Analyst at Google.

**********

For part two, follow link >>here>> I share my thoughts on current status of the HOW of Governance & Oversight, Legislation, and the WHY – addressing Communication of the care.data programme as a whole. And WHEN will any of this happen?

Key refs:

[1]. Second delay to care.data rollout announced – The Guardian February 18th 2014: http://www.theguardian.com/society/2014/feb/18/nhs-delays-sharing-medical-records-care-data

[2] NHS England directions to HSCIC September 13th 2013: http://www.england.nhs.uk/wp-content/uploads/2013/09/item_5.pdf

[3] BMA vote for opt In system: http://www.bmj.com/content/348/bmj.g4284

[4] July 14th at Wellcome Trust event ‘Sharing Government Administrative Data: new research opportunities’:

[5] EU Data Legislation http://www.esrc.ac.uk/_images/presentation%208_Beth%20Thompson%20Wellcome%20Trust_tcm8-31281.pdf

[6] DWP data linkage proof of concept trial 6 year period of primary and secondary data, December 2013

[7] Developments in Access to DWP data 2014

[8] NHS data sharing – Dr.Lewis care.data July 2014 presentation

[9] Possible UK Legislation http://www.esrc.ac.uk/_images/Presentation_7_Rufus_Rottenberg_tcm8-31280.pdf

[10] Progress of the changes to be made at HSCIC recommendations of the Partridge Review https://medconfidential.org/wp-content/uploads/hscic/20140903-board/HSCIC140604di_Progress_on_Partridge_review.pdf

[11] Scope list p22 onwards: http://www.england.nhs.uk/wp-content/uploads/2013/08/cd-ces-tech-spec.pdf

[12] Health and Social Care Transparency Panel April 2013 minutes https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/259828/HSCTP_13-1-mins_23_Apr_13__NewTemp_.pdf

art, communications, not health, words

I won’t be unoriginal – RIP Robin Williams

August 12, 2014 jenpersson

Good-Will-Hunting-Rowboat-Painting-facsimile-davesgeekyideas — The boat painting in the film Good Will Hunting, by the Director, Gus Van Sant

From The Huffington Post:

“Beloved actor Robin Williams was found dead on Monday, police reported. He was 63.

According to his publicist, Williams had been battling severe depression.” (Huffington Post, August 11th)

As a teen, we’d all seen Dead Poet’s Society in which he played inspirational teacher, John Keating. We didn’t just watch it. We felt it. “Oh Captain, my Captain.” It was a film which allowed us as teens to discuss suicide. He taught us something of self expression, through fiction. He inspired us to indeed, seize the day. Carpe Diem. We felt his awkward authenticity. Or perhaps, his real-life authentic awkwardness. He had to manage his mental health publicly. There were occasions when you could see through the exterior, and see how hard that was.

One of my favourite of his films, is Good Will Hunting. Whilst cliched fiction, I have always enjoyed the park scene, in response to the boat painting discussion in which Will (Matt Damon) disrespectfully hits raw notes in Sean’s (the role played by Williams ) life. Matt Damon’s character hits out at criticism of his chosen path in life and avoiding the expectations of others. He counters, “At least I won’t be unoriginal.” That is perhaps a comic’s greatest fear.

Whilst playing a psychologist, and asking his client to open up, Williams manages to do the same for himself on the screen. He somehow touches a genuineness in that role, perhaps revealing an ability for self-examination which not all of us possess. Whilst playing a character, I believe in that role we see much of what it meant to him being authentic as an actor and as a human being. He discusses the value and need we have of revealing who we really are. The importance of being oneself. And the grit of authentic experience. Comics are famous for being less than happy on the inside. Extrovert exteriors can be used to mask the inner storms and insecure introvert.

We, Joe Public outsiders, will never know the real Robin Williams, but I believe this WTF radio interview with Marc Maron captured some of the authentic him, from 2010.

It comes with a ‘bad language’ warning if the title doesn’t give it away (mainly at the start): WTF interview April 26, 2010.

Mark gets Robin talking about playing the early days Mork, stand up clubs in the seventies and fellow comedians and experiences, learning his art. He talks about fears and authenticity, plagiarism and ‘the celebrity’.

The art of being a comic seems to have been fraught with fear of failure and fear of feelings, but a need to use them to engage with an audience. “What do you do with the anger? What do you do with the fear? ” He openly agrees with the interviewer, ”Big Time”. But he also shares how he deals with them. He shares his optimism on second chances, on alcoholism and heart surgery. He talks about divorce and living ‘in a different game as two units’, and how well his family manages it. They talk about sharing insecurities with the audience, and where they draw the line between sentiment and overstepping the mark, looking for approval from the audience. Effectively wanting to know from them, the universal question which makes the world go round, “do you love me?”

Talking about therapy they close by talking with humour, he puts the whole subject of dying over in the WTF category. He reveals through comic interpretation, discussion with his conscience. There is a fine boundary between his comedy humour and revealing his innermost thoughts. There may be many wondering about that interview today.

He was loved, popular with close colleagues and the wider worldwide audience. He will be missed. Most of all by his family, friends and those he knew, who should grieve in privacy. Let’s hope curiosity in the celebrity will permit them that.

His acting has been part of my life since I can remember watching films, and he touched the lives of many he will never know. My kids have laughed raucously watching him as Professor Brainard in Flubber only this week, in the summer holidays.

He was the deep Sean McGuire. He was the humorous DJ, Adrian Cronauer. He was the desperate & committed parent in Mrs. Doubtfire. He was engaged John Keating. He was the Fisher King. He enjoyed exploring dark traits in characters such as in the role of photo shop technician-turned-stalker in One Hour Photo. At the heart of each one was a glimpse into a conflicted character.

He was so much more. He was original. He was it seems, the very complex, Robin Williams.

Thank you, and Good Night.

****

Added Aug 13th: I believe there is a need for society to be able to talk about suicide, as there was when it was raised through Dead Poet’s Society. But how we do it, still needs sensitivity and adjustment.

The Samaritans called for extra care of reporting after news stories on August 13th breached guidelines. Their number: 08457 90 90 90

#caredata, care.data, communications, engagement, genomics, leadership, NHS, NHSEngland, politics, trust

Launching genomics, lifeboats, & care.data

August 9, 2014 jenpersson

On Friday 1st August the media reported the next giant leap in the genomics programme in England, suggesting the 100K Genomics Project news was akin to Kennedy launching the Space Race. [1] [from 2:46.30].

“The UK is set to become the world leader in ground-breaking genetic research into cancer and rare diseases, which will transform how diseases are diagnosed and treated, thanks to a package of investment worth more than £300 million.” [DH press release, August 1 2014. [2] ]

Whilst Mr. Cameron & George Osborne visited the arson-damaged Eastbourne Pier, the lifeboat staff and firemen who attended, back in Downing Street, representatives led by George Freeman MP signed the £300M investment package, the next step in the genomic investment plan, with American Jay Flatley, CEO of Illumina.

Mr. Cameron first announced this research drive shared with commercial pharmaceutical companies on 6th December 2011 and famously said ‘every willing patient should be a research patient'[3] (video) and they would consult to change the NHS Constitution to enable it:

“…with their medical details “opened up” to private healthcare firms, says David Cameron.”

This was the next step in the programme, hailed as an historic moment, a giant leap forward for genomics.

The photo call for the symbolic signing included Jay Flatley President, Chief Executive Officer and a member of the Board of Directors of Illumina, Inc, Sir John Chisholm Executive Chair of Genomics England & Chair of Nesta, together with Dame Sally Davies Chief Medical Officer and Mr. George Freeman [George 2] MP for mid-Norfolk, and the newly appointed Life Sciences Minister.

Fewer than twelve months before an election the Government has decided to commit commercially to a US based company, in a programme which Mr.Cameron himself said, has had controversy. That c-word is one the Conservatives will want to avoid in the coming election campaign.

This Channel 4 [4] film from almost 2 years ago, (December 2012) raises many questions as valid today as then. At that time, in contrast with today’s approach, the programme suggests that consent for research and data use would be assumed for all.

The inestimable Jon Snow asked then, why is the Business Department announcing this [the launch of the pilot programme, when focused then first in rare cancers]? The public may understand that commercial pharma, charities and the State work hand-in-glove (as Mr.Cameron’s 2011 vision stated), but as Jon Snow asks, not yet understand how this commercial venture will benefit the NHS long term as well as individual patients and the public as a whole? Is it concrete on benefits to patients vs benefits to UK plc?

So what was the key press message which came over?

The coverage of the week since August 1st, expounded the belief that through Genomics England Ltd we will do away with chemotherapy in the future. I believe this should be the source of a raging debate, but it passed by with little more than a few waves.

“We will look back in 20 years’ time and the blockbuster chemotherapy drugs that gave you all those nasty side effects will be a thing of the past,”said Jeremy Farrar Director of the Wellcome Trust, reported Sky. [5]

The original review given last summer to Genomics England including listing the rare diseases which may affect the 6% of the population, suggests one consideration, targeting those with very high likelihood of familial links and therefore success.[6] or Patients selected with a high probability of a single gene disorder. There are obviously great challenges in turnaround time for the genetic processing to be useful in clinical decision making. Considering whether or not it is timely or accurate enough to be of clinical benefit in acute cancer care clinical decision making will be vital. It is also what is being promised to patients who sign up, a faster, more efficient, improved offering on what is available already in the NHS genetic services today.

The interested population and profession would do well to get an independent medical update on the status of this, to understand it better if this is now established and its reliability, so what participants sign up for, is what they get on the tin:

“Results are provided for patients in a timely fashion (e.g. within 8 weeks) and with sufficient clinical accuracy (not yet established for WGS) [whole genome sequencing].” [page 3 of 8]

And what was the press result and public reaction to the news?

As one example, look at lunchtime on Friday August 1st, Radio 2 callers to the Jeremy Vine show. They included two undergoing chemo who felt they had to call in, to tell others, chemo is not always as bad as it sounds and make sure you don’t give up on it, refuse treatment or wait for this new genetic solution.

The impression was given, there is a new wonder solution within grasp on the horizon. This seemed to me rather reckless and unfairly manipulative on the ill and vulnerable to give them a blanket hope, that their cancer treatment may become so much better, soon. These are real people’s lives, not guinea pigs with which one can feel free to trial hypothesis and hype. If anyone now refuses chemo as a result of the Friday fantasy projections, their health may have been directly impacted. I would like to have heard a DH or Genomics England press manager speaking, not allowing such public free rein, to ensure it was factually accurate. But I’m guessing that Genomics England as an ALB is not really ready for press yet [their public engagement and education programme isn’t ready yet they confirmed when asked in July in an FOI], and the DH perhaps at arms length, thinks, it’s not their responsibility and outside their remit. Stuck in the middle, we have the commissioning body, NHS England.

How might this involve all of us, our NHS and cross into care.data?

In most recent memory, NHS England tried and so far failed in February 2014, to engage the public and clinicians in the extraction of our GP stored health records, in the care.data initiative. Care.data languishes in some sort of unknown black hole at the moment, with little public engagement and pilots promised ‘for autumn’. Both programmes are run under the auspices of Mr. Kelsey at NHS England Patients and Information Department, and arms length from the Department of Health. Last summer, Tim Kelsey and Sir Bruce Keogh presented a paper to the Board on Genomics and its interaction with NHS patient records. [7]

Given that the Genomics paper indicated that care.data and NHS held patient records were of paramount importance to NHS England I would like to have seen more transparency over this, including informed public and parliamentary debate:

“Issues of data ownership and transparency are of paramount importance to NHS England as set out in the Mandate and given the hugely positive developments in Care.Data. Geraint Lewis is leading this work, and has begun work to consider how the sequencing data might be held, connected to patient records and subsequently be exploited. It will also look at the connections between this work and the establishment of care data in the NHS. The NHS England data and informatics team will retain oversight of the informatics and data work and discussions continue on how it can best inform and support the implementation of business plan of Genomics England Limited.”

NHS England Board paper, July 2013 [7]

There has been almost no public statement from NHS England on genomics and our data management in the same discussion, until now. George Freeman MP [2] said on BBC Radio 4 (Starting from 2:46.30 in interview with Sarah Montague:

“It’s absolutely not the care.data initiative discussed earlier in the year. This is 100K patients, all volunteering and all providing their consent. It’s completely anonymised data in the data set, the only person who would be able to come back to the patient and make a link with the genomics and the diagnosis, is their doctor. We’re creating a database so that NHS researchers and industry researchers, can look at the broad patterns. 90% of patients with that variation, get that disease, this drug works in 50% of patients…It’s completely anonymised, there is no basis on which you could make the link. The only person who can make the link is the NHS clinician.”

Whilst this is NOT the same initiative, it intends to use some of the same data for those people who actively consent to participate in the 100K Genome Project.

The data will be extracted from care.data [which ‘assumes consent’ or requires active opt OUT, depending how you view it] to include longitudinal, phenotype data across a person’s lifetime. I spoke to the Genomics England media team last autumn, 2013, which confirmed this intent at that time.

The trouble is for Mr. Freeman [2] and these statements, that the public knows ‘anonymous’ in care.data turned out to not be anonymous at all. ICO and HSCIC [8] are still working this out. [HSCIC has just published its first review of pseudonymisation review 9] It was discovered that far from being released only to clinicians and researchers, our hospital data has been shared with all sort of unexpected third parties, without consent. [see the Partridge Review]. This surprised and shocked many, to public outcry and the resultant loss of trust [15] in the programme has yet to be rebuilt. So some listeners may well and understandably have had concerns that their data may be used for purposes to which they have not agreed.

Some say that genetic data by its very nature, despite stripping data identifiers, cannot be non-identifying, or stay that way:[16]

“It only takes one male,” said Yaniv Erlich, a Whitehead fellow, who led the research team. “With one male, we can find even distant relatives.” [Jan 2013]

“If they choose to share that’s a very admirable thing because by sharing freely, progress for everyone is accelerated, and if someone is not comfortable we should respect that too and find ways for them to still participate in research,” he said.

What are the next steps – or should we expect, one giant leap?

As regards care.data from all, it is I believe reasonable, that we should we ask: how we should expect our care.data to be used, and trust for what restricted purposes it will be extracted and stored for the future? What mechanisms will separate consent for care.data commissioning from this kind of research? How will citizens trust this data sharing now as the Department for Patients and transformation care.data proposals seem still open ended in scope in particular for social care [17], and alongside other ever widening government data sharing? [18] How will the public know where the future boundaries of care.data scope creep lie?

If anything has been learned from care.data to date it must be this: We should continue to ask for more public involvement in policy and planning, not just the post-event PR if the state wishes to ensure success and prevent surprises. What happens next for this data programme, and for our national programme of genomics, 100K?

{Part two continues here}

******

[1] “It’s a hugely ambitious project, it’s on a par with the space race how Kennedy launched 40 years ago.” [from 2:46.30 BBC Radio 4 Int. Sarah Montague w/ George Freeman]

[2] Downing Street Press Release 1st August – genomics https://www.gov.uk/government/news/human-genome-uk-to-become-world-numb

[3] 6th December “Transcript of a speech given by Prime Minister at the FT Global Pharmaceutical and Biotechnology Conference” [https://www.gov.uk/government/speeches/pm-speech-on-life-sciences-and-opening-up-the-nhs]

[4] 10th December 2012 DNA Database concerns Channel 4 http://www.channel4.com/news/dna-cancer-database-plan-prompts-major-concerns

[5] Wellcome Trust- comment by Jeremy Farrar http://news.sky.com/story/1311189/pm-hails-300m-project-to-unlock-power-of-dna

[6] Strategic Priorities in Rare Diseases June 2013 http://www.genomicsengland.co.uk/wp-content/uploads/2013/06/GenomicsEngland_ScienceWorkingGroup_App2rarediseases.pdf

[7] NHS England Board paper presentation July 2013 http://www.england.nhs.uk/wp-content/uploads/2013/07/180713-item16.pdf

[8] ICO and HSCIC on anonymous and pseudonymous data in Computing Magazine http://www.computing.co.uk/ctg/news/2337679/ico-says-anonymous-data-not-covered-by-data-protection-act-until-its-de-anonymised

[9] HSCIC Pseudonymisation Review August 2014 http://www.hscic.gov.uk/article/4896/Data-pseudonymisation-review

[10] November 2013 ISCG – political pressure on genomics schedule http://www.england.nhs.uk/iscg/wp-content/uploads/sites/4/2014/01/ISCG-Paper-Ref-ISCG-009-001-ISCG-Meeting-Minutes-and-Actions-26-November-2013-v1.1.pdf

[11] Wellcome Trust August 1st 2014 The Genetic Building Blocks of Future Healthcare

[12] Fenyan – For successful technology reality must take precedence over PR https://jenpersson.com/successful-technology-reality-precedence-public-relations/

[13] Next Steps in the Sequence – the implications for whole genome sequencing in the UK – PHG Foundation, funded by the PHG Foundation, with additional financial support from Illumina. The second expert workshop for the project was supported by the University of Cambridge Centre for Science and Policy (CSaP) and the Wellcome Trust http://www.phgfoundation.org/file/10363

[14] Anti-elderly drugs proposals rejected by NICE: Channel 4 http://www.channel4.com/news/nice-assessment-elderly-health-drugs-rejected-contribution

[15] The Royal Statistical Society identifies a Trust Deficit

[16] The Whitehead Institute for Biomedical Research in Cambridge, Mass in the WSJ, Jan 2013: “”It only takes one male,” said Yaniv Erlich, a Whitehead fellow, who led the research team. “With one male, we can find even distant relatives.”

[17] Adult Social care ISCG, 2014 http://www.england.nhs.uk/iscg/wp-content/uploads/sites/4/2014/01/ISCG-Paper-Ref-ISCG-009-002-Adult-Social-Care-Informatics.pdf “Personalisation – citizens should increasingly be empowered to have choice and control over their care; and there will be increasing numbers of people funding their own care and caring for others”

[18] Minutes of the Public Sector Transparency Board of 11 March 2014

*****

For avoidance of confusion [especially for foreign readership and considering one position is so new], there are two different Ministers mentioned here, both called George:

One. George Osborne [George 1] MP for Tatton, Cheshire and the Chancellor

Two. George Freeman [George 2] MP – The UK’s first-ever Minister for Life Sciences, appointed to this role July 15th 2014 [https://www.gov.uk/government/ministers/parliamentary-under-secretary-of-state–42]

*****

#caredata, care.data, communications, NHSEngland, trust

care.data communications and core concepts [Part one]

July 1, 2014 jenpersson

“My concerns about care.data are heightened, not allayed by the NHS England apparently relentless roll-out and focus on communications. Whilst they say it will take as long as it needs, there is doublespeak talk of Oct-Nov. pilots. It is still all about finding the right communications, not fixing flaws in core concepts.”

Today at the Health Select Committee Mr. Tim Kelsey, on behalf of NHS England, said that care.data pilots will be in October/ November and in the meantime they are listening to the “constructive challenge to NHS England how to build trust in the [care.data] programme.”

Here’s my real experience of that listening, why it may not help and what still needs done. (And in under 4 months if in time to be of any use for the pathfinder pilots, which are only of use to the whole if done properly. )

[Part one] care.data communications and core concepts – Ten takeaways from the Open House event.

The NHS England led Open House Day [1] on June 17th was a listening opportunity according to the draft agenda for:

“patients and the public to influence the work of NHS England at national and regional level.”

Here are some of the things I learned:

1. Public Awareness

Mr.Kelsey asked the room (he was in London, other locations took part by live link) how many have:

a) heard of care (dot) data and

b) how many think they understand what it is is?

We couldn’t see his room, but he said ‘about half’ understood it. Our room’s show of hands was similar.

My reaction: One would expect everyone attending to have heard of it, the event after all was billed as in part about care.data. The level of understanding should be higher than the average in the public, since many (in Basingstoke at least) were NHS England or more involved than the average citizen.

Feedback overall was consistent with the latest MORI Ipsos poll [2] commissioned by the Joseph Rowntree Reform Trust in which the minority know it well and over 50% say they have never heard of it. That’ s a long way to go to reach people, inform them adequately to meet legal Data Protection minimums and let them enact their patient choice.

2. Communications Message & Scope

A consistent, frequent communications message is that ” there are FAQs and materials, we have the answers, we just need to communicate them better.”

My response: communication is failing because the core scope of what care.data is, is fluid. Without something concrete and limited, it cannot be explained neatly. As one NHS England communications member of staff said to me this week, ‘we haven’t got an elevator pitch.’ So it’s not about the materials or the methods, it’s the substance that is flawed. When you’re talking about extracting, storing, sharing and selling some of our most intimate information, a vague notion of pooled experience is not good enough to trust. People want to know exactly what information, is being shared for what purpose, with whom, where. And how long will they keep it for? NHS England simply do not have the answers to that, so, that elevator pitch? It’s never going to get off the ground in a meaningful way. And anything less than the answers to those questions, doesn’t meet the Fair Processing requirement of Data Protection Law.

Today at the Health Select Committee Mr.Kelsey was asked, will patients be able to trace in future where their data went? There was a rare and stunning silence. And after a benefits statement, there was still no answer given to the question. [update: Hansard now available, Q525/526]

Scope cannot be fluid and changing – the use of our personal information that we sign up to today, must stay what we agreed to tomorrow.

Data Protection requires that the minimum data is extracted so this ever increasing scope creep, but only *one* chance at opt out are at odds with each other. What plans are in place to meet Data Protection fair processing EVERY time new things should be added and more data could be extracted? It’s a legal necessity. An ongoing change communications process MUST be in place.

3. Timing

Mr. Kelsey said, on rollout timing that NHS England would take it ‘as slowly as we need to.’

My response: This reiterates the ‘no artificial deadlines’ but appears to be doublethink in contrast with the statement confirming ‘autumn 2014’ extraction for Pathfinder (pilot) 100-500 practices. How will the pathfinder (pilot) locations be ready to test a communications process which as yet does not exist? How will it pilot a consent process for young people, the vulnerable, those with complex health system needs, the at risk, those outside ‘the system’ with GP records? A process which by its nature must be applied to any opt in or opt out choice, if others make a decision on their behalf yet from the meetings’ discussion, whose informed consent appears not even begun to be considered? Or how will solutions to past Data protection Law failings be found from thin air, when data has been breached in the past, continues to be shared in the present and there is no solution to resolving those failings for the future?

4. Language simplification

There is a tendency to oversimplify the language of the Care Act, into ‘care.data will not be used for any purpose other than ‘health benefit’ – whereas benefit is not mentioned in the wording:

My response: Is to question why this is? Does benefit sound better than promotion perhaps? Again, words should be used accurately.

5. Users simplification of the Care.Act wording

The actual wording is ‘the promotion of health’.

NHS England are similarly very keen to point out explicitly that care.data cannot possibly be used for insurance or marketing purposes, such as junk mail.

My response: Yet again, the wording of the Care Act does not state this explicitly. In fact, it leaves pharmaceutical marketing for example, quite open, ‘for the promotion of health’. And there is no legal barrier in the Care Act per se, for firms which receive data for one purpose, such as BUPA the hospital provider in London, using it for another, such as BUPA as refining premiums. BUPA Health Dialog received individual level patient data in the past. How do those patients know what it was then used for or shared with? Perhaps Data Sharing Agreements can specify this, but the Care Act, does not.

Claims to rule out “solely commercial” can’t be backed up by the wording of the Act. Will “the promotion of health” still permit uses such as marketing by pharmacies or ‘healthy eating’ campaigns from big food chains? There is no obvious definition – and leaves wide interpretation open.

When Sir Manning spoke at the Health Select Committee he (rightly) said HSCIC can only restrict and determine what they do ‘within the law’. The law needs to be tight if the purposes are to be tight. Loose law, loose uses.

6. Use by Data Intermediaries to continue

care.data will continue to be on offer to third party Data Intermediaries it was confirmed in the panel Q&A.

My response: some third party intermediaries in part perform outsourced data services for the NHS. But do they also use the data within their own business to inform their business intelligence markets? They sell knowledge gleaned from raw data onwards, or have commercial re-use licenses for raw data over which we in the public have no visibility or transparency. We cannot see within these businesses how they build their own ‘Chinese walls’, self-imposed restrictions to ensure security between different parts of the same umbrella organisation. Allowing third parties to re-sell data means control over its use, owners and management is lost forever. Not secure, transparent or trustworthy. I explore their uses with commercial brokers more here in a previous post. [3] Considering I was told that my personal confidential data will not be shared with third parties, in a letter signed by the Secretary of State for Health, I am most unhappy about this. I will find it hard to trust new statements of best intent, without legislation to govern them.

7. Data Lab – restricting user access

Mr. Kelsey indicated that going forward the default access to our health data will be on the premises of HSCIC, the so called “Fume cupboard” or “Data Lab.” However he noted, this would not be for all, but be the ‘default’.

”The default will be access it on the premises of the IC. That won’t be universal for all organisations….”

My questions: Whilst a big improvement from giving away chunks of raw data via CD or to remote users, these processes need documented and publicly communicated for us to trust they will work. When will it be built and operational? How will we know who all the end users are if the same rules do not apply to all? How will those exceptions be granted? Documented? Audited? Will raw data extraction still be permitted? It’s the exceptions which cause issues and in future, the processes and how they are seen to be governed must be whiter than white. For those with direct access, users of the HDIS or HES, will a transparent list of users be published? At least for now, they do not show up on extraction audits so the public cannot see what those users access or why. So, a good step, but can’t stand alone.

Until this secure data lab is physically built, any data extracted cannot go into it. That won’t happen by October/November I should think. So will NHS England be prepared to extract data anyway, into a setting they *know* is LESS secure and a NOT yet a safe setting?

8. Governance

We were informed, an Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott, has agreed to advise the care.data Programme Board to evaluate the first phase pathfinder (pilot) stage.

My feedback: I find this interesting not least because the Information Governance Review [4] under her direction in March 2013 decided that commissioning purposes were insufficient reason to extract identifiable data. Personal confidential data should only be disclosed with consent or under statute and “while the public interest can also provide a legal basis for disclosure it should not be relied upon for routine data flows. [footnote, p.63]”

What value is Independent Governance if it has no legislative teeth and can only advise? At the Health Select Committee today, he said she would be able to offer a view, and a number of parties will be able to express views & be ‘in agreement’. But I wonder who owns the ultimate final go/ no-go decision whether the pilot should progress to full roll-out?

9. Anonymous Sounds Safer

Feedback on the handout: The care.data notes need not only to be accurate but transparently truthful.

In my opinion, words are again misused words to indicate that data is anonymous. 1706204_datauses Whilst the intention of the merged CES output (GP records combined with HES files) may be that some users will see only pseudonymous data, the extracted and stored data is identifiable unless opted out. Name is held in the Personal Demographics Service. [5] This is one of the key communications messages I have taken up with HSCIC, NHS England, raised to the DH through my MP. To reassure the public by saying name is not stored, is deliberately deceptive unless it states simultaneously that it may already be held in the PDS and/or linked on demand.[6]

The Partridge Review [7] has dispensed with the notion that data is anonymous once and for all. Now it must be managed accordingly as identifiable data within Data Protection law and communications must stop misusing the anonymous concept to reassure the public.

“It’s a beautiful thing, the destruction of words.” ( George Orwell, 1984)

10. My own experience of engagement

The most interesting part of the day for me personally however, were the discussions which were unstructured and when we were free to talk amongst ourselves. Unfortunately, that was very little. The structure (at least in Basingstoke and appeared similar on screens elsewhere) was based around tables of about 10 which included at least two NHS England staff at each.

At the end of the morning session, before lunch, as the other participants had left the table, a Communications person and I got into conversation on the differences between care.data, the Summary care Record (SCR) and where Patient Online was to fit in our understanding of which data was used for which purpose.

We discussed that since care.data is only monthly retrospective extracts, not for real-time record access, it would not be a suitable basis for Patient Online access – care.data is for secondary uses. So, we moved onto the challenges of SCR access at local level and how it will be possible to offer everyone Patient online when so many have opted out of the Summary Care Record. We began to talk stats of SCR availability and actual use in hospitals.[8]

Sadly, the table facilitator appeared to decide at that point, that our discussion needed guidance and rushed to fetch a senior member of staff from Strategic systems. And rather than engaging me in what had been a very positive, pleasant two-way conversation, with the Comms person asking me questions and our exchange of views, the Strategic Head took over the conversation with her NHSE team member, effectively restricting further discussion, even with her body positioning and language. Being informed is OK, as long as its the ‘right’ information?

I don’t think that’s what patient engagement is about. The subject needs real, hard discussion, not just managed exchange using pre-designed template cards of topics that we are told we ‘should’ discuss. Perhaps ignorance is strength, but in my opinion, keeping Communications staff informed only ‘on message’ and not of the wider facts and concerns is shortsighted and does them, and patients, a disservice, but then again:

“If you want to keep a secret, you must also hide it from yourself.” (George Orwell, 1984)

For [Part two] care.data communications and core concepts – Questions, Communications and Actions : link here >>

*****

[1] The NHS England Open House recording June 17th http://www.nhsengland-openhouse.public-i.tv/core/portal/NHSopenhouse

[2] IPSOS Mori poll conducted for the Joseph Rowntree Foundation: http://www.ipsos-mori.com/Assets/Docs/Polls/jrrt-privacy-topline-nhs-2014.pdf

[3] My post on uses of our records with commercial Data Brokers – https://jenpersson.com/flagship-care-data-2-commercial-practice/

[4] The Information Governance Review ‘Caldicott 2‘ https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/192572/2900774_InfoGovernance_accv2.pdf

[5] The Personal demographics Service at HSCIC (including name) http://systems.hscic.gov.uk/demographics/pds/contents

[6] The Data Linkage Service at HSCIC http://www.hscic.gov.uk/dles

[7] The Partridge review: http://www.hscic.gov.uk/datareview

[8] Summary Care Record use statistics https://www.whatdotheyknow.com/request/scr_care_settings_with_viewing_c#incoming-446569

***

Fun fact: George Orwell’s Nineteen Eighty-Four is currently number 5 in the UK Classics Fiction Amazon ranking. And 86th in fiction overall. Sales up over 5,000% in the US since the Snowden revelations, a year ago.

MORE BACKGROUND ON THE EVENT:

Within the other programmes of Patient Online and Patient Participation, care.data was a one hour session. It included the blue plasticine people short animation, a speech by Mr.Kelsey, a 15 minute table discussion on one pre-given theme from a range of four, reading aloud the summary of that discussion from each table within the room, one question per venue raised outside the room to the panel via video link in London, and their answers. Our discussion topics were brief, controlled and relatively superficial. It could have been a productive day’s workshop on only that.

The Open House took place simultaneously in four venues across England, Basingstoke, Leicester, York and London, connected through a live videolink at a number of points throughout the day. The recording in part, can be viewed here.

I attended the Basingstoke event, particularly keen to learn about national programmes such as care.data and hear about any updated plans for its rollout, to learn about patient online, and to meet the NHS England team in the South as well as other interested people like me. I hoped for some real public discussion and to hear others get their questions aired, shared and on the table for resolution.

I met one other ‘only’ patient and whilst I was kindly told by a further active PPG organiser, that I should never refer to myself as ‘only’ a patient, but you know what I mean. I’ve applied as a lay rep on our local CCG for an opening next year, until then, I’m learning as much as I can from others. Other attendees I met were those already more closely involved with NHS England in some way already. As NHS England staff, facilitators, representatives from Clinical Commissioning Groups, Patient Leaders and PPG leaders.

#caredata, care.data, choice, communications

care.data communications and core concepts [Part two]

July 1, 2014 jenpersson

“My concerns about care.data are heightened, not allayed by the NHS England apparently relentless roll-out and focus on communications. Whilst they say it will take as long as it needs, there is talk of Oct-Nov. pilots. It is still all about finding the right communications, not fixing flaws in core concepts.”

For part one of this post see here >>care.data communications and core concepts [Part one]

Other sessions on the 17th Open House included:

Patient participation in general practice: exploring how can you be involved in the changes in general practice, including the introduction of the Friends and Family Test and changes to the GP contract in relation to Patient Participation Groups.

Patients Online: This session was to enable attendees to find out more about work to increase the number of patients who can access their health records online, book GP appointments online and order repeat prescriptions. The accompanying film was described by a fellow table guest as, ‘awful. Too long, dull and dry.’ It felt that there was a lot of weight given to this part of the day and that the uses of data during the event were all mixed into one pot. care.data will not be the source for patient online access, yet we came away thinking of the data as one source to enable that purpose. Poor communication or clever marketing, will depend on your point of view.

The big picture however, of how our health records will be used and bring benefit is in my opinion, being manipulated and purposes conflated to make one thing seemingly lead to another, which are in fact unrelated.

care.data is for secondary purposes, not direct care use by physicians for example. We are told this sharing of data is a requirement for other things as well. Firstly for patient safety and quality. And for integration between services.

Integration

Mr.Kelsey said at the Open House day, (around 36:00 minutes in, if you listen yourself) “we’ve all heard this word integration, I’m not terribly sure what it means, but I think what it means is that local people have a proper say in the way that health services are designed. So to give you voice, to give the local community voice, care.data is really important….”

I should hope that Mr.Kelsey has a jolly good understanding of integration and knows exactly that it is the merging of health and social care under the motto ‘transformation’. Social care under ADASS and health care are under all sorts of pressures to integrate, budgets are being pooled, shared and ring-fenced in various discussions, including my local county Health & Adult Social Care Select Committee:

“…Director Adults’ Services, told the (Chichester) Committee [9] in November 2013: The Care Bill would mean a radical whole system change involving the biggest ever transformational change for Adults’ Services The Council was building the foundations for further significant change.”

Perhaps on the day, he meant something else.

Mr. Kelsey did, in his speech note however, that the programme should be respecting the fact it is *their* data, *not* the NHSs. (This is in contrast to his previous position in which patients should not be given an opt out choice – Prospect Magazine, 2009 when his stance was “no one who uses a public service should be allowed to opt out of sharing their records. Nor can people rely on their record being anonymised”).

It’s an argument oft repeated that we should *own* our data, but somewhat meaningless if it took a campaign and public outcry to require an opt out mechanism, and put the programme on hold. I feel the language is being manipulated to create the impression we don’t already own or have rights to our health data. The opposite is true. And many know that, just see the killer question below from Leicester. As long as records are held only at GP level, we will have much greater control and visibility of their use, than if shared centrally.

Many I have spoken with ask why it is not possible to leave data at local GP level for only clinical care, and extract nothing identifiable from hospitals without consent?

Other People’s Questions

In that vein, I summarise what 4 other people asked Mr. Kelsey and his panel in London about care.data on the day, and what I felt was missing from the answers to give balanced communications. The locations of about 80-100 people at each, were each allowed to put forward one question to the panel via web link, the question selected from all those discussed at the tables, by an organiser at the site. They covered Benefits / Data Uses / Confidentiality / Communications.

View them for yourself here, from 01:13.06 in the NHS Open House video:

Question selected to be asked from Basingstoke: “If people opt out of giving data will then the results not then be inaccurate?”

The larger volume of data, the better quality the data will be, the greater the benefits will be. Choosing not to opt out. That will, depending on the volume of that, affect data quality to a degree we won’t know that. Over time, once people’s concerns have been addressed, we hope that quality will improve.

Missing from the answer: [10] HES data is cleaned, SUS data is not, and both are known to have significant quality issues on validity and accuracy. The data has been extracted and stored for twenty plus years. Higher volume of data does not equate with a higher quality of data. You don’t make a better quality haystack, just by adding more hay. The volume of data is less important than it be representative of all parts of the population, but there is a risk that those opting out tend to be, as one GP has told me, ‘the white middle class and educated leaving others overly represented’. Only having more data is not a solution for quality.

*****

Question from Leicester: “Are we saying there will be only clinical use of the data – no marketing, no insurance, no profit making? This is our data.”

Panel: New legislation was brought in which made it very clear, data could only be released for the benefit for health and care, and it cannot be released solely for commercial purposes – yes, data can go to a private sector organisation, yes commercial companies, but only where they are working for the benefit of health and care, for example, Dr.Foster Intelligence, or other data information intermediaries who do a lot of work with data and who do a lot of work with the NHS to help inform decisions. Data will still be available to commercial companies. The other point, there is going to be independent scrutiny, which will be formalised within the law, to have independent scrutiny by the Confidentiality Advisory Group, which already exists which can independently scrutinise the releases.

Missing from the answer: care.data is not for clinical care. This indeed is our data and belongs to patients not NHS England, and should be respected as the NHS Constitution requires. Data continues to be released, and will continue to be so even under the Care Act legislation, to third parties in financial transactions. No recipient organisation by function (such as insurance) is excluded per se, rather recipients are judged based on their intended use of the data. The precise terms are open under the Act :

****

Question from London: “How do you propose to reset expectations and perceptions, with any future communications, and given that the way the first round was handled, provoked apparently such strong public resistance and suspicion about the NHS England motives?”

Panel spokesperson: We didn’t get it right the first time round, partly because we approached that at the National level. There was a leaflet that went out nationally. We will work with the 100-500 GP practices, and work co-produce materials in those areas and work with what is already there locally, GP practices, LMCs, PPGS, Healthwatch, using local knowledge, and patients so we can make sure everyone can understand, we understand how we can communicate this, what the concerns are, so we can get the message across, so everyone can understand what the choice is and what this is about.

Mr.Kelsey added: …[…]This isn’t about us and you, this is about us collectively. How do we ask patients and citizens for permission to use their personal information…we need to get that conversation right.”

Communications materials

Draft FAQs and information sheets to use in those conversations were on the table for participants information and to take away. The Data Uses page wording is interesting but poorly phrased, as it misled a couple on my table to think the ‘extraction’ was not identifiable. (see point 9 above). And the Benefits case study header is “How might it reduce variations in cancer treatment & care” but concludes that actually the Cancer Registry already does this, and they instead mean something similar would be useful for diabetes. This misuse of benefits makes me think, they’re finding it jolly difficult to find real ones. But if we all at these public meetings, believe the presented stories with the positive spin as fact, then fact they will become.

“And if all others accepted the lie which the Party imposed—if all records told the same tale—then the lie passed into history and became truth.” (George Orwell, 1984)

What next?

It is vital in my mind that care.data communications match reality of what needs done technically and in procedures, to drive expectations of what care.data will deliver and when. Why does an easy read brochure make no mention whatever of who data may be sold to? There is no mention of what organisations continue to receive HES and wider data. Instead it talks about data being shared to ‘know the health needs of everyone’ yet the very people who are outside the system are the ones whose needs we don’t know today – there is a huge amount known from the rest of the existing patients’ needs from QOF and other GP data extractions, even that used in CPRD for research – purposes for which GP records under care.data are not approved.

The current doublespeak between the comms message and the reality are so far apart, between the technical possibility of what can be done well now, and what needs done to achieve the hoped for benefits, that the current message is setting up the project for failure and benefits will not be realised any time soon. It’s not ready to roll out through ‘improved communications’.

To be fair, the smaller workshop I attended on the 27th, flagged ‘still need to consider how best to engage here’ with many population groups. But it appears to me the Communications teams are effectively doing their best to package something which is not ready to be wrapped. To dot the i on the report, when the chapters aren’t in place yet.

“They were engaged in producing something called an Interim Report, but what it was that they were reporting on he had never definitely found out. It was something to do with the question of whether commas should be placed inside brackets, or outside..” [1984, George Orwell]

I’ve worked on both technical and change management/ communications teams [in another industry]. Project teams’ close working and each having an understanding of the other is vital. But the team members I have met so far, appear to work in silos, without enough linkage to know the functional gaps between them, in technical system, procedures and the link to change & comms. There is no way in my lay opinion, that a pilot of these half-formed knowns will be ready for autumn. For the NHS England leadership to continue to plug that it is, with messages of emotional manipulation of why more data is needed, will condemn care.data to Room 101. A tortuous drawn out reformation of an existing concept. When really it needs planned afresh from the ground up to get the needs of the people it should serve designed into its consent, collection and communications processes – not added on as the ribbon at the end.

I was more optimistic about the benefits in the past, as long as the procedures around consent, governance and security were addressed. Having spoken with and listened to the needs and concerns of various charity representatives this week, at another smaller event, I am much less so. Their complex needs, people who go in and out of different parts of the health and social care system at different times in their lives, with real concerns around confidentiality and risks have not begun to be addressed. Real issues for all of disclosure to GPs to ensure care may affect us all. But for many of their clients, they have needs which often carry huge trust and security issues which could put not only their medical care, but their faith in the charities and people working with them, in jeopardy.

I may be in a minority, but I’d rather have my factual understanding and ask hard questions than hear only a tailored communications message, if we are to get this right for our public good.

“Being in a minority, even in a minority of one, did not make you mad. There was truth and there was untruth, and if you clung to the truth even against the whole world, you were not mad.” (George Orwell, 1984)

I therefore asked the group at the end of the morning workshop, as Mr.Kelsey had done at the Open House event, how many of the attendees were really comfortable and confident that they knew what care.data was so that they could be a go-to point for questions, or even advocate for the programme as NHS England hoped.

Did they understand what data would be extracted, why and used by whom. About 1/6 raised a hand. That’s *after* the event at the end of the morning spent discussing what issues exist for hard-to-reach, or as one attendee said ‘easy-to-ignore’ groups, and how communications channels will reach them.

One said he did not need to know all the facts to help be a comms channel. Another said he wouldn’t advocate for something he himself did not believe in. It was the first time we started to get genuine cross-group discussion, when in the meeting the table model had been employed again, but for those groups, disabilities, challenges, societal issues are not in silos. Real debate, of hard issues is needed, and yes it’s awkward and might not be able to be ‘managed’ in the same way, but it’s real.

Our group identified a similar basic concept need across their client interests – a rolling consent model which allows opt in and out to change over time. Consent not only for what parts of planned uses the data would be used, but should also consider what parts of the record they are happy to share. Military, youth offenders, teens, the at-risk nature of these groups may mean they wish sections of their history to be restricted if not used for clinical care. And they may wish to share data when under the care of a GP but restrict it again, when under a military one. Or teens may be happy to permit data sharing at another time in their lives, but not permit access to their whole history. The DH Youth Offender expert raised the prickly issue of teen confidentiality and how will consent be gathered when parents may not tell them about the scheme at all, thinking there is ‘nothing to know’. We explained the concept of Gillick to the comms staff and that it’s not about an age of consent in the normal legal sense. What happens if a teen finds out their data has been extracted and wants it removed as teen or adult? We asked about name stored in the Personal Demographics Service and asked why data could not be deleted if clinician and patient both agreed a mistake had simply been made.

These complex and simple core questions need asked to get the whole thing built on a sound and trusted foundation. And they need to be in place for a pilot to make it worth having at all.

If the needs, concerns and understanding of the reps in the room can’t be addressed in a dedicated workshop, how will a remote campaign achieve it for the population at large?

Some at our table asked why the system needs more data when you haven’t managed or used much of what we had in the past? I would also ask what progress is to be expected on unresolved quality and procedural issues with the current systems and data? Simply adding more hay to make a bigger haystack, does not make it easier to find a needle.

No wonder we can ask if it is really not just about commercial uses which comms don’t want to talk about, wonder why you never mention the data linkage service using PDS data [5] held and have concerns of overzealous surveillance by Big Brother.

There are risks becoming so heavily reliant on centralised data. Recently, patients have been wrongly deleted from GP lists, leaving them without a doctor through the cleaning firm’s administrative or process error.

Some are concerned that patients lose trust in their GP and withhold information. Others about this honey-pot of data for the individual citizen’s security. Professionals have voiced concern for GPs and consultants if factual misrepresentation by statistics used for ‘ranking and spanking’ will adversely impact their decision making and make them more risk averse. In a negative way. Or with respect to waiting times and treatment, the heavy use of data in measurement creates a risk that it is misrepresenting the facts through lack of context or even, as in several high profile press cases recently, that such pressure is felt, that records are falsified.[12]

“And when memory failed and written records were falsified—when that happened, the claim of the Party to have improved the conditions of human life had got to be accepted, because there did not exist, and never again could exist, any standard against which it could be tested.” (1984, George Orwell)

I’m concerned about all of the above. Perhaps holding care.data in room 101 until it is a manageable and explainable concept, backed up with technically and procedurally sound processes, would be the best place for it, for some time to come. Results and expectations create failure if they cannot marry up in reality. This isn’t about communications. If you don’t really know what you’re communicating and can’t get it understood easily, then it’s back to the drawing board.

My concerns about care.data are heightened, not allayed by the NHS England apparent relentless rollout and focus on communications. Whilst they say in doublespeak it will take as long as it needs, there is talk of a Oct-Nov pilot launch. A pilot must test the finished model at small scale, not a less-than-half-ready one. Whilst the public push is all about finding the right communications, what is needed is fixing flaws in core concepts.

Doing without it, and waiting, would be better than doing it wrong.

*****

For part one of this post see here with ten learnings from event feedback >>care.data communications and core concepts [Part one]

UPDATE: 3rd July 2014 – If you want to give your views on proposals to introduce tighter controls and safeguards on the use of personal health and care data do so by 8th August to Room 2N12. https://www.gov.uk/government/consultations/protecting-personal-health-and-care-data

Or respond online here> http://consultations.dh.gov.uk/data-sharing/protecting-health-and-care-information

[links 1-8 reference Part One]

[1] The NHS England Open House recording June 17th http://www.nhsengland-openhouse.public-i.tv/core/portal/NHSopenhouse

[2] IPSOS Mori poll conducted for the Joseph Rowntree Foundation: http://www.ipsos-mori.com/Assets/Docs/Polls/jrrt-privacy-topline-nhs-2014.pdf

[3] My post on uses of our records with commercial Data Brokers – https://jenpersson.com/flagship-care-data-2-commercial-practice/

[4] The Information Governance Review ‘Caldicott 2‘ https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/192572/2900774_InfoGovernance_accv2.pdf

[5] The Personal demographics Service at HSCIC (including name) http://systems.hscic.gov.uk/demographics/pds/contents

[6] The Data Linkage Service at HSCIC http://www.hscic.gov.uk/dles

[7] The Partridge review: http://www.hscic.gov.uk/datareview

[8] Summary Care Record use statistics https://www.whatdotheyknow.com/request/scr_care_settings_with_viewing_c#incoming-446569

[9] Minutes of the November Health & Adult Social Care Select Committee in Chichester http://www2.westsussex.gov.uk/ds/cttee/hasc/hasc141113ucmins.pdf

[10] The Quality of Nationally Submitted Health and Social Care Data, England – 2013, Second annual report, Experimental statistics – http://www.hscic.gov.uk/catalogue/PUB11530

[11] My post on commercial use of data with brokers

[12] Falsified hospital waiting times: The Telegraph http://www.telegraph.co.uk/health/healthnews/10590713/One-in-four-hospitals-records-false-waiting-times.html

***

Sales of 1984 have rocketed since the Snowden story broke in 2013: http://www.latimes.com/books/jacketcopy/la-et-jc-nsa-surveillance-puts-george-orwells-1984-on-bestseller-lists-20130611-story.html

#caredata, change management, communications

If at first you don’t succeed – try, try again. But think about changes first.

June 24, 2014 jenpersson

On June 24th 2014, it is the 700th anniversary of the Battle of Bannockburn, at which the Scots defeated the English, and their ruling King, Edward the second.

The legend of Robert the Bruce ahead of the battle, hiding out in a cave on the run after six defeats, is renowned the world over. The Scot saw a spider building a web. Time and time again the spider would fall and then climb slowly back up to try again. After many attempts, the spider managed to begin to weave a web on the cave wall and achieved its aim. Robert the Bruce, so the story goes, was inspired by the spider not to give up and went on to defeat the English at Bannockburn. The motto of the story is usually:

“If at first you don’t succeed – try, try again.”

Whilst perseverance is an admirable trait, stubborness may not be. Trying the exact same thing which failed previously, in precisely the same way, may be said to be either determined or foolish. Trying again, but incorporating learnings from the past failure with flexibility to incorporate learning-by-doing, seems an altogether smarter choice. Modifications for improvement and changes in action and their execution based on lessons learned have a higher chance of success*.

“Bannockburn is arguably the most famous battle to be fought and won by the Scots in Scotland, but it is widely acknowledged to be more than that— it continues to conjure up ideas of freedom, independence, patriotism, heroism, perseverance, and triumph against overwhelming odds.” [Bannockburn Heritage Centre]

In projects, overwhelming odds against achieving success can be built-in from the beginning, through lack of foresight to plan how to measure it. If you don’t know how you will measure success, it is hard to know when it has been achieved and at what cost. To measure success, you first need to know tightly what are your defined project scope and purposes. This helps set the goals of what you want to achieve technically, its human understanding and crucially, expectations of how and when success will be measured.

Steve Jobs is sometimes quoted:

“You can’t just ask customers what they want and then try to give that to them. By the time you get it built, they’ll want something new.”

Trying again isn’t always about trying the same model, rolling out the original communications plan louder, or slower, or just again, but about embracing changes and adding in flexibility for future change. Change is not a single event, but a process, and any attempted project launch needs to be prepared to learn from the past but also to plan for the future, as that process occurs. The scope of the project however, must stay tightly controlled, or risks losing control of budget and achieving the project aims.

By being visionary about what will be needed in future and aiming to be ahead of the design specifications there is room left for learning-by-doing in the ‘how’ you want to achieve the project, but it can’t allow deviance to become an entirely different ‘what’ of project scope.

To try and meet a future goal, basing it only on present specifications and expectations, means it will be outdated and fail when you reach the future implementation date. By launch date, the design and functionality are already outdated and not fit for purpose.

To compensate for that, measurable bite-sized chunks of projects, can be a way of frequent checking in to see if you are still on track with the overall aims of what you want to achieve, whilst retaining the flexibility to adapt to the human aspects of progress, and how you will achieve it.

Measures of success therefore need to be taken frequently to stay on track, ensuring alignment with your defined project scope and purposes. ‘Checking in’ to see if you are still on the correct course. This helps set the goals of what you want to achieve technically, in human terms and on a timeline, which crucially sets expectations of how and when success will be seen to have been achieved.

Some of the success at Bannockburn was recorded at the time in poetry. More recently, the themes have been preserved in music.

If the Flower Of Scotland tribute to Robert the Bruce, the Scots’ ‘almost National Anthem’ at least in terms of sporting events, is not your thing, you might prefer Aaliyah’s rendition of the theme, Try Again. Though her wardrobe choices are slightly more surprising than the Corries.

The theme is the same. To think again, before trying again, is wise.

“Those days are past now
And in the past they must remain
But we can still rise now
And be the nation again
That stood against him
Proud Edward’s Army
And sent him homeward,
Tae think again.”

Flower of Scotland, the Corries, 1967

*****

For more recent celebrations see: http://www.visitscotland.com/

Photo credit: Dilip Barman via photo.net ‘ thistle near Bonar Bridge north of Inverness, Scotland.

*My lessons learned from experience of change management in global projects rolling out SAP, 2001-2006.

#caredata, care.data, communications, HES, HSCIC, NHS, NHSEngland

Hear no evil, see no evil, speak no evil – the impact of the Partridge Review on care.data

June 20, 2014 jenpersson

The Partridge Review came out on Tuesday 17th and everyone should read it. But not just the summary. Both the full version and [1] summary are here.

So what is positive about these massive revelations? At long last it appears that the hands have come off the ears and the real issues are being listened to.

My summary: “NHS England cannot now put a hand over its eyes & hope care.data issues are only about communications.”

I feel somewhat relieved that the issues many have been concerned about for the last ten months, have now been officially recognised.

Amongst them, it has confirmed the utter lack of clear, publicly transparent and some quite basic, governance procedures.

It’s no surprise then, that our medical records, on at least two occasions in this sample 10% review of the releases, have gone to undocumented destinations. (Let’s ignore the fact of the other 90%!? of which we have no visibility yet).

At least eight insurers or re-insurers were in this 10% sample, so how many times did such companies get it, in the other 90% which has not been reviewed and we haven’t heard about?

How will ‘promotion of health’ purposes exclude them in future? In my opinion, it won’t.

Why would an insurance company be excluded if it requests data in order to provide health care coverage?

This is the wording of the Act, not ‘for the benefits of the NHS’ or any other more ‘friendly’ patient facing framing.

At the NHS Open Day on Tuesday, the same day as the release, a panel spokesperson stated that commercial information intermediaries [2] will continue to be approved recipients. Gah – why this is such a bad idea, I wrote about here. [3]

The Partridge review said there had been no complaints. [4] MedConfidential pointed out an example of those of which they know. Kingsley Manning told the Health Select Committee [5] on 8th April, there had been seventeen opt outs of Hospital Episode Statistics, ever. Fourteen in 2013 and three prior to 2013.

“Q377Chair: There is not an opt-out rate for care.data yet, presumably.

Kingsley Manning: No, not on that, but in terms of the number of people who have acted to opt out, it is 3 opt-outs up until April 2013 and a further 14 opt outs since 1 April 2013.”

Would I be wrong to suspect each was accompanied by a complaint? You don’t usually opt out of something you are happy with.

The reason for these low numbers of both complaints and opt out in the wider public? WE DID NOT KNOW. The public didn’t know we had anything to be unhappy about. Many still do not.

As soon as I fully understood the commercial selling of my family’s patient records, this below is the query for advice / complaint I made in January to ICO, before the launch was postponed.

I wanted some guidance from an outside body, because I was being told the law permitted this extraction, so what good would a further complaint to HSCIC do? I had already written to my MP and had a response from the Secretary of State / Department of Health (which tried to tell me patient identifiable data was not shared with third parties), as well as feedback to my concerns raised by email with HSCIC, all of which only tried to reassure me. I had no one to otherwise raise concerns with. The ICO advisor I spoke to told me at that time, that they had had many similar complaints.

I’ll be blunt and say now, especially since the Open Day [more on that later, especially on the content of care.data FAQs we received], I think it’s fair to say I am far better informed about care.data than most in the public. When Mr. Kelsey asked for a show of hands, how many had heard of care.data, all put their hands up. Bearing in mind the rooms were full of highly involved people, NHS England staff, CCG and PPG leaders, and few ‘ordinary patients’ like me, and the agenda contained a section on care.data, it’s unsurprising we had heard of it. When Mr.Kelsey asked, “how many of you understand what it is?” the response was around 50%. I’d dispute also, that all of those 50% truly do.

Some of the comms material we were given is factually incorrect, for example, around research. Currently, GP held data planned for care.data extraction and its merger with HES, into Care Episode Statistics (CES), is approved for commissioning purposes but not for research by the GPES group. It’s not approved for research purposes, so its no good telling us how good it is to have it for the benefit of research. What has already been released for research, and continues to be so, is what was already extracted in the past, with or without consent, and informing patients.

Records will not be deleted which raises all sorts of historical reporting concerns if mistakes are identified in retrosepct.

I have spoken with several NHSE Communications people who genuinely asked me, or left me asking the question for them in my own mind, “If I don’t understand it, then how is the public expected to?”

The concerns I had now almost five months ago, seem vindicated by the report. The actions taken since, the loose wording of the Care Act 2014, and little evidence of intention to make any change which is binding i.e. the opt out is only granted at the whim of the Secretary of State, it’s not statutory and that there is no independent governance to be put in place , have done nothing to bolster my confidence these gaps have been filled.

Simon Denegri, Chair of INVOLVE – the UK’s national advisory group on public involvement – and NIHR National Director for Public Participation and Engagement in Research, wrote a response on his blog [6]. I agree with the spirit of his post, and positivity, [he also writes excellent haiku] but where I disagree I outline below. There is room for positive hope for care.data, but first, let’s properly address the past.

“I am sure that many better informed people than I will pore over the detail. Others will use it to strengthen their case that we should put a stop to any manner of data sharing.”

Perhaps most key, I disagree with his fears the report could be used by ‘others.’ I don’t know anyone who wants to see a stop to ‘any manner’ of data sharing, including me. It’s the *how* and *why* and *with whom* that still needs work. Some of us may not want it without active consent, but that is part of the how, not if. It’s not *any* manner that I object to, it’s *this* manner specifically.

I have read the Review in detail and whilst there is much positive in attitude in the Review, the reality of what difference this will make with any real bite, is hard to find.

For example, “The HSCIC will plan a new ‘data laboratory’ service which will protect the public’s information by allowing access to it in a safe environment with HSCIC managed networks and facilities.” But this is with caveats, as it’s the “default,” Tim Kelsey said on Tuesday to the NHSE Open House. It does not mean *all* and if global third party intermediaries and business intelligence companies are still to receive data, then I can’t imagine the global likes of IMS Health, or Experian, or Harvey Walsh will send someone along to Leeds every time they want to extract data. Who will be given special permissions and how will they be decided and recorded, how will it be documented what data they access, if they get a free pass?

Unknown others have direct access to the HES system now through HDIS. Public Health should rightly use our health data, but a transparent list of all approved organisations here too, would be a positive step.

Simon’s post continues,

“As you would expect from a previous Chair of INVOLVE, Nick Partridge, has secured fundamental changes in the governance of HSCIC and data releases going forward. These include patients and the public sitting on the main committees reviewing data releases, open publication of data releases and a programme of ‘active communication’ with the public”.

Patients and public on the DAAG committee. If they are informed about data governance law and good practices, yes, if it’s just ‘representative’, not so useful. But DAAG is HSCIC staffed, and HSCIC has a legal and policy remit from the Department of Health and in its roadmap to distribute data, and will create ‘a vibrant market of data intermediaries’, as it would be wrong to exclude private companies simply on ideological grounds. So the concept of ‘independent’ is flawed. Where are the teeth needed to reject an application, if it’s in the interest of the reviewing body, to accept it?

“It’s my view that the Partridge review, its recommendations, and the swift response from the Health and Social Care Information Centre (HSCIC), offers us the opportunity of a fresh start with the public on this issue.” [S.D.]

This could be used as an opportunity to brush the past aside and say time for a fresh start, but it can only be so if there is confidence of change.

NHS England cannot now put a hand over its eyes and hope the issues go away or that it’s only about communications.

The past needs fisking, issue by issue, to avoid they happen again. And the real risks need addressed, not glossed over. Why?

Because let’s assume the public all thinks it’s fine, and none of us opt out. Then through these still flawed process holes, a huge data leak. The public loses trust all over again, and the opportunity for the care.data benefits is lost forever.

Get it right now, and you build a trustworthy and seaworthy future, for the future public good.

There are other more detailed questions I would raise, [I previously worked in functional database design amongst other things] and I will believe these recommendations will have an effect, if and when I see the words become actions. The Review by PwC and Sir Nick Partridge is a positive listening and speaking exercise, but the plans must become reality with actions, some under legislation, in my view.

And perhaps the simplest, unspoken point seems to being deliberately ignored as if just not seen, unmentioned, except by data protection gurus [7]. There is legal obligation to provide information to citizens before their data is released, in a transparent way, to whom and for what purpose. What happened to Fair Processing? [8] Past and present?

Sir Kingsley Manning, Chair of HSCIC, asked in the Guardian on 22nd January [9] that we have ‘intelligent, grown up debate’ about data sharing. Well my hand is certainly off my mouth. I wrote a feature in my local paper and I’m still speaking to anyone I can to promote fact-based informed decision making. But wider Public Debate is still sorely lacking [BBC Question Time anyone?] Through it, I’d like to encourage wider knowledge of the why, who and what of secondary purposes of data sharing and to ensure we can get it done transparently and safely.

Why?

To ensure we, as patients, continue to trust telling our GPs and hospital consultants all the information that we need to, and have no fear it will be held against us by an insurer or others.

We need to trust we will not be penalised whether through disclosure, by stigma and exclusion from policy or care; or whether by opting out, we could be penalised for not participating and not get ‘advantages’ offered to others, just like store loyalty cards.

We may think the insurance debate is irrelevant, if like me, we are not ‘self-payers’ or don’t use a private insurer. With a £30bn gap in planned budget and needed spend over the next five years, someone is still going to be paying for our healthcare.

If it’s not the State, then who? The risk more of us will pay for our own care in future is real. If not for us, for our kids, and their privacy will be a whole different ball game if genomics gets involved.

Meanwhile, we are told for care.data identifiable personal data is crucial for patient safety tracking. In my opinion, patient safety will be harmed if confidence in confidentiality fails. The relationship between clinician and patient will be harmed. And no number of Dr. Foster Intelligence reports by tracking quality or safety, will be able to fix those failures which it has helped create.

Perhaps most tellingly, NHS England is still to make a statement on the Review. There is no news yet here.

It still seems to me the NHS England leadership and its data sharing policy carried out through IC past and present, wants to continue without grown up debate under the PR motto ‘it’s all going jolly well’, and to act with the attitude of a teenager, who with a shrug of the shoulders will tell you:

‘It’s easier to ask for forgiveness than permission.’

***********

January 25th, 2014 – my ICO complaint / guidance request

{abbreviated only to show issues I feel still need addressed}

Dear ICO
I would like to ask for your urgent advice.

I am a mother of X children under 12. […] Our confidential patient data is being extracted via care.data to the HSCIC. Until my recent research to understand what this was all about, I did not know that HSCIC stored all our patient confidential health data from all sorts of health providers: Hospitals, Mental Health, National Child Measurement Programme, [10] Immunisations and Health visitors.

I have not knowingly given my permission for our data to be stored or transmitted to or from HSCIC in any format in the past. If by signing a consent form for treatment I also signed consent for sharing with this central body, it was without my knowledge and therefore without informed consent.

I have significant concerns over its use, now that I understand how widely our patient data may be used and now even shared abroad. [11] […]

There is no public information on :

1. How long our data will be stored for – data retention and data deletion and cross border governance
2. There is no opportunity for health record deletion of anything which was simply a mistake i.e.: recorded on the wrong record, or a misinformed opinion on lifestyle entered by the GP, not fact
3. How will future governance be assured that it will not be slackened to allow less strict pseudonymisation, and identifiable releases; for example to US firms who establish themselves in the NHS England healthcare market?

I do not believe that the legal rights created through the Health and Social Care Act are sufficient justification to overrule the Common Law of Confidentiality, and the Data Protection Act 1998. [And the data shared before 2012 was not covered by the Act which did not exist and was not retrospective.] Even if the dissent codes are applied, patient data has been or will be extracted to the HSCIC (without my permission) and it will contain identifiable items such as clinician name, practice and CCG locations, and referral dates which may be used as identifiers to connect with HES data stored at HSCIC – since HSCIC also holds data in the Personal Demographics Service [PDS], [12] I believe they may also link the data [13] then to my personal demographic identifiers. Just an undefined or internal governance procedure to suggest that they would not, when it is technically possible, is not sufficient oversight. […]

I do not consent for the use of our [hospital HES or other] data in health research – because it has not been explained to me, what that term means and the implications of this assumed consent.

I cannot know what the other future uses will be for our health information stored today. I do not feel that I can apply any fair processing to their health records due to the lack of publicly available information and scope of the full uses of their data today and in future. […]

Sincerely,
Jen Persson
XXXXXXX

———————————

[1] The Partridge Review Summary and Full report http://www.hscic.gov.uk/datareview

[2] On selling data to Intermediaries and the governance which permits it https://medconfidential.org/category/press-releases/

[3] Commercial users of NHS patient data – third party use – my blog https://jenpersson.com/flagship-care-data-2-commercial-practice/

[4] Complaints and why confidence needs restored https://medconfidential.org/2014/press-release-partridge-review-patients-need-proof-to-restore-confidence/

[5] Health Select Committee 8th April 2014 http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/health-committee/handling-of-nhs-patient-data/oral/8416.html

[6] Simon Denegri’s blog response to the Partridge Review http://simondenegri.com/2014/06/17/partridge-reviews-elegant-demolition-of-past-practice-on-personal-data-offers-opportunity-for-fresh-start-with-the-public/

[7] Information Rights and Wrongs – Jon Baines’ blog http://informationrightsandwrongs.com/2014/06/18/the-partridge-review-reveals-apparently-huge-data-protection-breaches/

[8] ICO Processing Data Fairly and Lawfully http://ico.org.uk/for_organisations/data_protection/the_guide/principle_1

[9] The Guardian, January 22nd 2014 ‘Lack of Debate on the Sale of Patient Information‘ http://www.theguardian.com/society/2014/jan/22/debate-sale-patient-information?CMP=twt_gu

[10] National Child Measurement Programme data managed by HSCIC http://www.hscic.gov.uk/ncmp

[11] Data use in the USA Memorandum between DH, HSCIC and the US Dept of Health and Human Services to include exploring secondary stores http://www.healthit.gov/sites/default/files/hhsnhs_mou_final_jan_21.pdf

[12] Personal Demographics Service http://systems.hscic.gov.uk/demographics/pds/contents data already stored at HSCIC

[13] Data Linkage Service at HSCIC to manage the requests for data which is stored in different silos and brought together on request http://www.hscic.gov.uk/dles

Image courtesy of an interesting post on the history of the featured monkeys: http://frontiersofzoology.blogspot.co.uk/2013/04/why-are-three-wise-monkeys-usually-apes.html

#caredata, communications, leadership, Tech, transparency

Appendix F. For successful technology, reality must take precedence over public relations.

June 6, 2014 jenpersson

Richard Feynman via brainpickings.org bit.ly/1q1qWLt

June 6th 1986. Six months after the disaster, the Report to the Presidential Commission was released about The Space Shuttle Challenger.

Just over twenty eight years ago, I, like fellow children and citizens around the world, had watched the recorded images from January 28th 1986. We were horrified to see one of the greatest technological wonders of the world break up shortly after launch and crash into the sea minutes later. The lives of Challenger’s seven crew were lost, amongst them the first ‘ordinary citizen’ and member of the teacher in space project, mother of two, Christa McAuliffe.

As part of the follow up audit and report, Richard Feynman’s personal statement was included as Appendix F. Personal observations on reliability of the Shuttle. You can read his full statement. Below are just his conclusions and valuable lessons learned.

“If a reasonable launch schedule is to be maintained, engineering often cannot be done fast enough to keep up with the expectations of originally conservative certification criteria designed to guarantee a very safe vehicle. In these situations, subtly, and often with apparently logical arguments, the criteria are altered so that flights may still be certified in time.

They therefore fly in a relatively unsafe condition, with a chance of failure of the order of a percent (it is difficult to be more accurate).

Official management, on the other hand, claims to believe the probability of failure is a thousand times less. One reason for this may be an attempt to assure the government of NASA perfection and success in order to ensure the supply of funds. The other may be that they sincerely believed it to be true, demonstrating an almost incredible lack of communication between themselves and their working engineers.

In any event this has had very unfortunate consequences, the most serious of which is to encourage ordinary citizens to fly in such a dangerous machine, as if it had attained the safety of an ordinary airliner.

The astronauts, like test pilots, should know their risks, and we honor them for their courage. Who can doubt that McAuliffe was equally a person of great courage, who was closer to an awareness of the true risk than NASA management would have us believe?

Let us make recommendations to ensure that NASA officials deal in a world of reality in understanding technological weaknesses and imperfections well enough to be actively trying to eliminate them. They must live in reality in comparing the costs and utility of the Shuttle to other methods of entering space. And they must be realistic in making contracts, in estimating costs, and the difficulty of the projects.

Only realistic flight schedules should be proposed, schedules that have a reasonable chance of being met.

If in this way the government would not support them, then so be it. NASA owes it to the citizens from whom it asks support to be frank, honest, and informative, so that these citizens can make the wisest decisions for the use of their limited resources. For a successful technology, reality must take precedence over public relations, for nature cannot be fooled.”

Richard Feynman, 1918 -1988

“The Challenger accident has frequently been used as a case study in the study of subjects such as engineering safety, the ethics of whistle-blowing, communications, group decision-making, and the dangers of groupthink. It is part of the required readings for engineers seeking a professional license in Canada and other countries.” [Wikipedia]

Feynman’s Appendix F: Personal Observations on Reliability of the Shuttle is well worth a read in full.

From a business management point of view, Lessons Learned are integral to all projects and there is no reason why they cannot apply across industries. But they are frequently forgotten or ignored, in a project’s desire to look only ahead and achieve future deliverables on time.

Lessons learned can make a hugely important contribution to positive change and shaping outcomes. Assessing what worked well and how it can be repeated, just as important as learning from what went wrong or what was missing.

Public relations efforts which ignore learning from the past, and which fail to acknowledge real issues and gloss over reality doom a project to failure through false expectation. Whether due to naivety, arrogance, or under leadership pressure, it can put a whole project in jeopardy and threaten its successful completion. Both internal and external stakeholder management are put at unnecessary risk .

In the words of Richard Feynman, “For successful technology, reality must take precedence over public relations.”

#caredata, care.data, change, change management, choice, comm consent, communications, trust

care.data – Riding the Change Curve

May 30, 2014 jenpersson

I’ve been inspired by many people this week.

Shakespeare who is long dead. Another, less famous, we celebrated at her funeral after only a few weeks of living with diagnosed endocrine cancer. She would have turned 76 this week.

The change curve

How do we deal with change?

Anyone familiar with the theory of grief, or more happily (as I am from my previous professional life) the similar theory for managing change, knows the stages along the curve we need to go through, to reach a new status quo after a process of adjustment.

After the initial shock and denial, there may be anger, frustration and fear before any acceptance or new optimism is possible.

Individuals follow the curve at their own pace. Some may not go through each stage. Others may simply be too upset, disagree early, give up with or repel the change, and never reach a comfortable position or commitment to a new status quo.

Whether it is grief or a business change, the natural initial response is emotional, and starts with loss. Loss of a person, of position, of something we cannot control. It can take a great deal of support, time and good communication to go through the journey.

(And yes, there’s a comms lesson for care.data in here.)

Before we begin on a change we need to understand the point from where we are starting. And crucially, to understand that Change is about people, not technology or business process.

The change curve starts with shock

From many people’s perspective, the concept of care.data, has been a shock.

For those working on the project, or at NHS England, that is probably hard to understand. ‘Why on earth all the fuss?’, they may ask. It’s easier to understand, if you realise the majority of the public had no idea at all, our health data was used for anything other than our direct care and some planning. Much less may have been winging its way on the cloud across the Atlantic. It feels like data theft.

It’s easy for those in a technology project to see ‘coded’ health records simply as data.

‘Coded’ is however like saying we speak the ‘French language’. Computers ‘only speak’ code, so telling the public it is coded is either trying naively to make it sound safer than as if ‘plain language’ was sent from the GP system to the central system, or it is misleading.

In the same way, if you say ‘opt out’ the system records ‘9Nu4’ on your record. In addition, there will be a label to go with it, so if GPs run a report to find everyone who has opted out, they can. It’s not hard to understand that MOTDOB is mother’s date of birth. There is a full public dictionary of these codes.

NHS England and the project team, should also not forget that this is not just ‘data’.

To us, this is our irrevocable health and social imprint. Signposts to who we are, have been and perhaps, will be.

It’s personal and private. And as yet, we may have only shared those facts with our GP. Only our GP and not yet our partners, or parents. And then we find out global Health Intelligence companies might have our sexuality or pregnancy history, conditions we may not have told anyone but the GP. Data intermediaries may have complete picture of prescribed medicines, drawing on information from 100,000 suppliers, and on insights from billions of annual healthcare transactions. “mountains of data from pharmacies, insurance claims, medical records, partners and other sources, 17 petabytes of data spread across 5,000 databases.” We want data used by the right people for the right reasons, and know where it goes and why.

HSCIC is giving it away almost for free.

To them it may be only data. To us it’s intimate.

But for the three of us in this marriage, it’s information which has been used and shared with these third parties, and as far as we can see, only one of us really benefits from the deal. Identifiable or not, is only part of the story. It’s our biography we did not give you permission to read or tell.

The initial shock, fears, anxiety and general disgust that our personal details are sold (sorry) given away on a cost recovery basis charging to cover processing and delivering the service, should therefore be more understandable if you realise it was a complete surprise.

(The surprise may or may not be quite as great as the exploding whale posted via Wired at the end of this post. Go on, you know you want to.)

Change is the only constant. How can we progress?

The Change Curve based on the Kübler-Ross Grief model

So, what happens now? How can the public move forward, to get to a position of trust and acceptance, that this is what is already happening with our hospital data (HES), and planned to happen with the majority of our GP stored data in future (whether we like the idea or not)?

In order to move us along the curve, NHS England have a large task ahead. In fact, a series of tasks ahead, which are not going to happen overnight. How are change and communications working together?

As there’s no detailed ‘care.data progress’ public communications easy to see on the top level of NHS websites I can only see other info as it comes out through online search alerts. And since it’s my, my children’s and all of us as citizens, whose data that is being discussed here, I think we should be interested and want to find out and question the ongoing status. The GP FAQs have gone or are hard to find, and the patient FAQs are still inaccurate IMO. This page should be top level leading, not six unsearchable clicks down.

From the latest update in the care.data advisory group meeting notes, with much more concrete progress to see, it is good to see that communications features often, and note ‘a comprehensive engagement plan is already underway.’

That plan will be interesting to see mapped out as time goes on, but I do wonder whether it is the right time to be looking at engagement, when so much for the care.data programme remains to be clarified or is undecided?

Questions remain how less raw data can be given away, further legislation, the ‘one strike and out’ how to deal with data breaches, views on enabling small and medium enterprises (SMEs) data access, GP staff opt out understanding, public op out understanding, clarifying the narrative of risks and safeguards. Some steps to be reviewed not until ‘over the summer’. And that’s only a summary of a summary, I am sure only a glimpse of the foam on the top of the wave of what is being done under the surface.

An engagement plan can’t have gaps. Communications is not one-way, that’s PR. So we can only hope there is a real engagement underway of listening which will result in action, but not in ‘transmit mode’. Engagement needs to be concrete to work from day one. We don’t need a sticky plaster and pat on the head, we need fixes and facts to back them up.

Communications and Change

Why can comms not start now and be added to as we go along, you may ask? Whilst it can, and indeed most communications plans need some flexibility, a good Communications Plan needs to ride leashed tightly to the Change Management Plan. And given that different individuals are each somewhere different on the change curve, at any given point in time, you need to be able to address questions that any of them may have, simultaneously, regardless of whether they have just heard the news, or are almost finished their change journey. For GPs, their staff, other medical professionals, citizens and patients.

Riding the wave of the change curve, some are nearly back on the beach, when others haven’t yet entered the water. Some have got out and will not be persuaded back. Others may.

Therefore until many of the open issues are resolved, until governance and legislation is clear, unless it is focused on listening and resulting action, most communications can only be wasted PR rhetoric. Perhaps there are great plans. But Houston, we don’t have a communications problem. Honestly. As far as I can see.

There is no communications issue, there are issues which need communication.

Why? Because folks who opted out already will not be sold on the benefits. They will only be convinced by a clear picture of known and well governed, legislated, mitigated risks AND benefits. Then they can weigh up a decision. (Assuming indeed, the Secretary of State is a man of his word and maintains the patients’ right to object, which is not a legislative right.)

“The law is a statutory enactment which requires the disclosure of the data, which means the data becomes exempt from the main parts of the DPA.” (ICO)

For the population not reached yet, however, there is a requirement to at least give fair processing, even if you can debate the fineries, all common sense says make the same mistake twice, and you’re sunk.

The trickiest part in the communications, is to address different segments of the population who are at different points in the curve, at the same time. Some of whom are hard to reach.

I am sure there are many people working behind the scenes to bring about this managed change. Let’s not forget, this programme was intended first to launch a year ago. Professionals are working on this, it’s not new. But Dear God, please don’t launch more communications along the same lines as before. September saw GP materials go out with no training and no measure of how well practices had understood the materials. A misleading poster and misdelivered leaflet for patients created more confusion. Which all went out before proper governance, legislation and technical solutions were in place to make it all work well. The advisory group minutes and Mr.Kelsey’s letter indicate there is much work to be done in these areas still. Yet engagement activities are planned May-July.

To look at basics, I think these three things for starters, need resolved before you can talk about risk mediation:

1. a) Purposes of what data is taken and b) who accesses data: the care.data addendum which sought wider purposes and third party access by think-tanks and information intermediaries is still to resurface, after being returned by the GPES IAG in February for amendment. Which means final data users remain somewhat undefined. And we’re still pending the complete audit of past and current data recipients through the audit overseen by Sir Nick Partridge. [NB: since done in June < see post]

2. Amber is not Green – data protection: Why is potentially identifiable data and what really quite clearly, will be identifiable when so many companies sole purpose is to take a wide range of data sources and mash them together, given no data protection in law and no clear choice over its use in HES release?

It may for release from HSCIC be treated more carefully than green data only in so far as it is not publicly published on a website,and goes to committee review, but it may be provided to a wide range of commercial companies who then create information from it which they release.

The raw data’s nature can be sensitive to us and it’s certainly personal, so that we would expect it to be kept confidential, and yet it is shared and may be combined with recipient’s other data sets are at individual patient level? It feels like a great big whale in the room – it’s not green, we can’t protect it, but if we close our eyes it might go away.

It’s not conducive to trust, when it feels like a con. Just call me Ishmael.

3. Individual data control – opt out and rights: Point 2 leads to a huge potential iceberg ahead which still needs resolved. The UK and upcoming new EU protection laws and their, the ICO and the HSCIC definition of anonymous and pseudonymous data. We must understand how they are to apply and are not only legal, but feel just and fair to us as citizens. It should be looking ahead to meet the coming law now, shaping not avoiding best practices.

What rights does the individual have? How will GPs resolve their conflict of protecting patient confidentiality and complying with the new law requiring them to release it? Some GPs don’t think it’s a good idea.

There will be some citizens who want no data stored centrally at all and even want their HES back out. What will they say to someone who point blank does not want any of their medical record outside their practitioners’ control?

So, are we about to see a repeat of the same communications catastrophe – launching engagement, before we know what exactly what it is we’re talking about? Surely not. But looking at the calendar…

As an outsider, I just wonder how can effective engagement begin, when questions may be asked which cannot be answered?

Workshops to separate truth from myth, risk going down as well as Ahab in Melville’s story, if you have people who are upset, and you have nothing to offer them but unsupported ‘reassurance’. I’d like to see a webpage or presentation of those myths, because I don’t feel I’ve seen many myself. If anything, issues have been debunked by careful wording rather than straight talking.

Change and Trust

Change can’t be done to us without huge resistance. Change has to happen with us, if we are to trust and adopt it. If collectively we get stuck in anger and fear, we’ll not get to acceptance. And it actually has the potential, suggested Ben Goldacre, if not already done, to leave a negative wake on wider research & society.

There has to be trust in the change, that it is for widely acknowledged ‘right’ reasons.

There has to be trust that the terms of the change are defined and stable. Words such as currently, and initially, have little place in the definition of future agreements.

There has to be trust that what we will lose, is in proportion and outweighed by what we’ll gain from the new.

When we read global stories of how healthcare data is misused, and we can’t see who has access to our own data on any real-time rolling basis, it leaves open the fear that data can be given inappropriately, without check and balance, for months. The recently released register is one good thing to come from the debacle so far, and the further audits are ongoing, expected towards mid-May, but any future register is only going to be publicly accurate 4 times a year. It’s better than nothing, but surely not hard to update in real time.

Until the history is entirely transparent, it is a challenge to see how concerns about past use and lack of past governance, and the lack of trust those errors created will be possible to fix. The sensitivity of our raw data is likely only to increase as scope is broadened in future, and the scale of the requests is expected to increase as the era of Health Intelligence takes off and becomes ever more profitable for those third parties.

Trust will need to increase if anything proportionately, as this scale and sensitivity increases. So any communications of future releases and their governance needs to be sustained. It’s not an afterthought of ‘what we’ve done’. It’s the key to being allowed to carry on doing it.

Change Managers need to understand an individual’s own story, values and what makes them tick, to have an expectation of what the change impact (possibly negative) will be for individuals or groups and what’s in it for them (the positive) and any wider impacts, for example considering the Public Interest. And all leaders, need to have available from the start, the information which will answer the questions for people in each of these groups, at every stage of the curve.

Decisions in the public interest, may be subjective. Jeremy Hunt has said that we,

‘will “get through” the heated public debate this scheme has caused regarding patient privacy and the potential for the data to be re-identified.”

I’d like to hope we get more than ‘through it.’

To say that, underestimates the task ahead.

It’s not a tunnel or a final destination, but a process.

And the longer the data is shared over our lifetimes, the more likely it will be re-identified with all the other passive and other Big Data which is shared in our future. So there’s no patch, pop up and coast to the beach. I can only think this is a one time chance, and the leadership comments seem to underestimate it.

It must be done correctly now, to set up a framework which will be robust enough for the future size and complexity of the future Big Data vision.

Legislation to build a solid Future foundation

There are still many unknowns it reads from the meetings, from opt out, to wide ranging governance issues, to securing watertight legislation. The scale and sensitivity of the data and how it has been handled in the past, shows how the current model is not fit for purpose.

This week there is still crucial legislation being considered which will help to fundamentally cement or fail public trust.

Trust not only in how our data will be governed, but in common sense in our governing bodies. The legislation addresses:

Retaining control and management of confidential information
Putting the independent Information Governance Oversight panel on a statutory footing
Independent oversight over certain directions and the accreditation scheme

etaining control and management of confidential information – See more at: http://www.allysonpollock.com/?p=1820#sthash.No8G7kcT.dpuf

retaining control and management of confidential information – See more at: http://www.allysonpollock.com/?p=1820#sthash.No8G7kcT.dpuf

I’m no legal beagle, but it appears to make excellent sense and the detailed wording (via Prof. Alison Pollock’s page) is very straightforward.

I hope it is clear that patient choice and public interest complement one another in these proposals. Just as Dr. Mark Taylor, Chair of CAG, outlined in an excellent essay,

“the current law of data protection, with its opposed concepts of ‘privacy’ and ‘public interest’, does not do enough to recognise the dependencies or promote the synergies between these concepts.”

If the Lords support Life Sciences’ interests, as many in the chamber do, they will need to support the proposals in order to ensure the public remain opted in to care.data.

Without these governance amendments, many more will opt out I am certain from talking to people on the street, and the value of the population-wide database will be undermined. So, the theory on paper next week, will have a crucial role in the practical outcome of the care.data implementation and its lifetime value.

No one said, change is easy

Importantly, in any theory one does well to remember the practical reality. Each response is unique to an individual. No one model will fit all. Each person commences the journey of a changing situation, from a different starting point. We each begin the process from a different level of baseline knowledge. We each have our own ways of dealing with loss, and experience different levels of anger or fear. There are early and late adopters.

Some things are difficult, but have to be gone through. For me, Tuesday was a day of looking back at wonderful memories.

We also sometimes need to accept what cannot be changed. When the time comes, I support the idea that we can live with a disease and dignity, not just the label that we are ‘dying’.

My final inspiration of the week, Kate Granger articulated this, so much better than I could, last week:

“I cannot imagine a human society free from cancer, no matter how much money we invest. As a cancer patient who will die in the relatively near future, I believe rather that instead of reaching for the traditional battle language, [life] is about living as well as possible, coping, acceptance, gentle positivity, setting short-term, achievable goals, and drawing on support from those closest to you.”

care.data requires courage from all the parties involved, because everyone is going through a certain process of change and compromise. Even those who planned the now delayed launch, need to recognise a need for change and why we’ve got to put a solid, not rushed foundation in now, and be in it for the long haul to get it right.

With lasting legislative powers, we public can better entrust our faith and data to the system, not just today, but into the future. With a proper independent Governance and oversight process we can hand you our trust for safekeeping with our records in good faith. We can only trust these proposed changes make not just waves, but make real progress.

If nothing really substantial changes in the pause, and we don’t see increased measures to create trust, all that will happen is a build up of frustration and pressure of all the people who can’t move forward from the initial anger and confusion. They will opt out. And there’s a risk public opinion will burst under pressure. No one will want to support health record sharing for any purposes, even bona fide good research, and there will be an explosion of opt outs. Projects will be abandoned, like a dead, washed up whale. (Which you really don’t want to happen. Really. It’s not pretty viewing, don’t say I didn’t warn you. But it’s kind of fascinating too and all the number crunching too.)

This can be avoided.

But plus ça change, plus c’est la même chose. Two months into the pause, are we seeing changes taking effect, or more of the same talk?

I look forward to better information on how and where our data has gone in the past. I think only after that will it be possible to get the history aired and resolved for improved future procedures once we have the complete audit picture, including that under Sir Nicholas Partridge, due towards the end of this month.

The further governance and independent oversight issues will be best resolved in legislation, which would help them be free of political change and create a framework worthy of the big data vision for the future.

In Summary

I hope the Change Management is as carefully thought out as communications and engagement is based on substantive steps before it.

These steps simply, start with:

1. a) Tighten and define clearly the purposes of what data is taken and b) who accesses data. Now and for future change.

2. Amber is not Green – data protection: Tighten what is potentially identifiable data and what really quite clearly, will be identifiable when so many companies sole purpose is to take a wide range of data sources and mash them together.

3. Individual data control – opt out, and legal rights. Will opt out get a statutory footing rather than Mr.Hunt’s word? Will we design now, for change in the UK and upcoming new EU protection laws?

Tighten the processes, define more of the facts, so you know what you’re communicating. Let people ask questions, and let us have sufficient time to go through the curve.

A rushed rollout, will create more people who block the change, opt out, and never return.

I realise much of this post addresses how I feel, and the feelings I have picked up from care.data events, from others discussing it on the street and school playground. Emotions have a role to play in this discussion, but better facts will go a long way to making objective informed decisions. And crucially, our decision making must be allowed to be objective and free from emotional coercion.

I’m cautiously optimistic and look forward to seeing public materials to get the GP profession and public on board and riding the care.data change curve each at their own pace. There is clearly a tonne of work to be done. It’s not going to be glassy, by any stretch of the imagination, but perhaps we need a few rough times to remind us what matters most to us, and why.

It makes us engage.

The question is, in the coming weeks and months, is NHS England prepared for genuine change and engagement with the public, not just PR?

#caredata, communications, leaflet, NHSEngland, scope creep, trust

Care.data – Getting the ducks in a row

April 18, 2014 jenpersson

Good Friday has different meanings and traditions across the cultures. For some the most sombre day of their church calendar. For others, another Bank Holiday and start of the long weekend in spring. For Mr.Cameron this year, getting stung by a jelly fish abroad.

For me, visiting family in a small nordic village, it’s the day of the annual duck race fundraiser.

2,000 numbered plastic ducks are thrown into fast moving water high upstream, and the public waits and watches anxiously as the toys approach the central village bridge and race beyond. The first to hit the finish line net at the weir after an arduous course, is the winner.

There are lots of obstacles along the route and some ducks get stuck. Children are allowed to pick up those off-track in side eddies and hurl them back into the main channel. As a parent, you inevitably lose your child at some point in the crowd, fret they may have joined the ducks for a swim, and the whole race always takes longer than we expect.

So, it feels, as a citizen and patient, is the current progress of care.data.

There was a misjudged start. There’s lots of obstacles still to overcome. It looks like the finish line is getting clearer. And some believe it might take longer than first thought.

Whilst on holiday I’ve taken time to read over the recent letter, to colleagues, from Tim Kelsey & NHS England. It’s addressed to colleagues, which I’m not, so perhaps it feels a little like looking over someone’s shoulder on the train, but hey, It’s the only update we’ve got.

Looks like some positive acknowledgements and steps are in progress:

We will work with stakeholders to produce support materials, such as an optional template letter for patients and ways of making opting-out more straightforward
We need to do more to ensure that patients and the public have a clear understanding of the care.data programme
This work is continuing and we will update you on these changes separately
We want to hear your views and suggestions so we can take action to improve and build confidence in the care.data programme. We will also be engaging with patient groups, GPs and other stakeholders through local and regional engagement events

Notably, it’s the first time NHS England has said opt out. In the past it has only ever been an objection. As a linguist, language is important to me. And the two are not synonymous no matter how often I may be told by NHS England that they are to be used interchangeably.

It’s the first time there really feels like more give, and less we’ll take without asking you first.

And it’s the first mention towards offering local and regional engagement.

There are some new hints which need explanation, such as a change towards who may use the data – described always as for secondary uses, clinicians and patients using it is new:

“Care.data is an initiative to ensure more joined-up data is made available to clinicians, commissioners, researchers, charities and patients.”

And there are some ideas which are making progress, but seem a little stuck.

“In addition, steps have already been taken in making changes to the law”…

Whilst changes have been put into the Care Bill, other rather sensible ones, such as legal penalties for data misuse were rejected. And the purposes are still so loose as to be possible to give data for a wide range of ‘health purposed’ clients. That was the day in which it appeared fewer than 50 MPs were in the chamber to hear the Care Bill debate in which nearly 500 came in to vote. (How they can reasonably and effectively vote on something in which they did not hear the debate, I don’t understand.) These are legal changes I believe which need hurled back to Parliament to get them on track again.

Experts much wiser than me, have made a proposal of comprehensive amendments, and seem, from my lay understanding, both really positive and practical.

The “optional template letter for patients” may be something GP practices could consider using to contact individuals where they know that leaflets were not delivered. Even Dame Fiona Caldicott did not receive hers. (BBC PM listen from 33:30)

If centrally, it is known where they did not reach patients, it would be helpful for GP practices to then be able to evaluate if there is an additional need to contact their patients. For example, in my area, no one I have spoken to received a leaflet.

Perhaps that might seem trivial now, and in the past, but for trusting the scheme I believe it is really important to know why that was. Because since no opt out was originally planned I want to know that the intention was truly to tell us all. Did they print enough? Distribute enough? Follow up at all? I’ve asked to find out. After all, it was our state money that paid for it. A previous Freedom of Information request, on the status of its distribution with Royal Mail, from Phil Booth of MedConfidential appears to contradict ministerial mutterings that said an exception was invoked. I know that for myself, I had not opted out of junk mail, yet I still didn’t get one. I knew to look out for it and inspected my pizza flyers and dog walking leaflets in every post in January. No leaflet and all of my friends were the same.

If the experts such as Dame Fiona, the GPES advisory group which in September had:

“major concerns about the process for making most patients aware of the contents of the leaflets before data extraction for care.data commenced”

and ICO felt the leaflet went out with the wrong content and was rushed then I want to know why, so that the same people are not making the same decisions, and will cost us time and trust again. Why it went ahead against every expert’s better advice is important to understand. “Regrettable that you are not now able to take any of our comments into account” was ICOs comment and the sentiment seems echoed by Dame Fiona on today’s radio broadcast.

Even a lay person like me, could see it was a disaster about to happen.

My suggestion, was that role-based patient communication would be much more understandable. Take some stereotypical sample citizens, map their ‘day-in-the-life’ using HSCIC data systems, show how these interactions send data to HSCIC and map them to show what data is extracted and where it goes, is stored and may be viewed and distributed by whom. There are an awful lot of individual scenarios so no model may match any real patient experience, but looking at it backwards, take all the HSCIC systems and extract a situation which would send the data up. A&E, School nurse, Electronic Prescription Service, Choose&Book, GP screening. Mental health call centre. It would be possible.

People should know what data, is extracted when, why and who will use it. Visuals are better than words. The leaflet failed in the case of care.data, but would an individual letter have achieved more, in just a few sentences?

More has been achieved to raise our awareness of the Health and Social Care Information Centre and Government uses of our health data, through all the hoo-ha in the press, and the re-tweet by David Nicholson of the care.data downfall parody, than by the original leaflet. Perhaps the leaflet’s measure of success was not intended to be a 100% reach at all. I hope we’ll understand more soon.

(** for updated thought 19th April see note below.) Should we presume an ‘optional template’ means that no paid letter will be provided from NHS England to all? GP practices may decide to use the ‘optional’ template to send out letters now. Professor Mathers had called for one. But I wonder if GPs themselves will be expected to bear the cost, of an imposed central initiative for which there is no choice to participate and yet the GPs are legally liable Data Controllers for complaints? If no funding is offered, and GP practices decide not to send letters out, it would seem a risk trade off. The risk of a patient complaining or indeed legal action, if they did not know their data was going to be extracted and and potential risk for harm ensued. Yet fair processing should be a Data Protection Act requirement. But is it for care.data?

This week also saw the list of number of patients published by GP practice. Helpfully with postcode. So if my practice were to want to post a letter to every patient in my area, at 53p second class, it would cost around four thousand pounds. I don’t know if they get any bulk discounts and one per household might reduce numbers. But that’s a lot of money – but perhaps (**) it may be covered centrally after all, though the letter does not indicate that? (I now also know how few over 90 yr old men are registered, if interested).

It seems like there is much positive going on in the undercurrents of the care.data developments, which the general public cannot see, such as the care.data advisory group work-in-progress.

There would seem much which needs work in a very short space of time for relaunch in autumn. But if Dame Fiona Caldicott, Chair of the panel set up to advise NHS and Ministers on the use and governance of patient information, said she thinks we need longer, then I am sure she is right. To take as long as is needed to get it right would seem sensible. To rush and fail a second time, would be irretrievable. Surely, her advice would not be ignored again?

The HSCIC this week also released the Framework Agreement between the Department of Health and HSCIC.

It will be interesting to see if this affects and changes the HSCIC roadmap. In my opinion, it should. The care.data addendum to widen commercial uses was pushed back but is still to resurface. There is still no clarity around commercial re-use licenses. These commercial drivers should come out if Mr.Hunt’s rock solid assurance is to be believed which, “puts beyond any doubt that the HSCIC cannot release identifiable, or potentially identifiable, patient data for commercial insurance or other purely commercial purposes.”

At the moment I would hope the HSCIC roadmap would change in its commercial focus:

“especially in relation to the potential sale of data”.

“Help stimulate the market through dynamic relationships with commercial organisations, especially those who expect to use its data and outputs to design new information-based services.”

It remains to see if it does.

That framework is a good read with a hot coffee (and a short snaps if you are where I am). What’s missing for me, is any reassurance at all that the HSCIC will remain public. There is a large chapter on what process would need to be followed if it were to change structure or be merged. And therefore does not rule out a private owner of the single central repository for our health, social care, research and recipient of integrated ONS data in future.

“Any change to its core functions or duties, including mergers, significant restructuring or abolition would therefore require further primary legislation. If this were to happen, the Department would then be responsible for putting in place arrangements to ensure a smooth and orderly transition, with the protection of patients being paramount.”

It would appear to me, that a future intent to privatise the ownership of care.data and more could remain open. Certain aspects of the day-to-day functions were potentially to be outsourced in a past ISCG roadmap. I would hope the core will remain firmly State owned.

Bizarrely, duck races are not treated equally across the globe. Wisconsin recently repealed their ban. It seems almost as bizarre, as the idea of selling our taxpayer financial and VAT data. Or our school pupils personal details. I wish I could say, one of these stories were not true.

What the duck is going on with Government’s attitude to our personal data? The Cabinet Office seems to be failing to give out legally required Freedom of Information responses, and yet happily selling the knowledge of our health, wealth and our children?

“These regulations also allow the department to disclose individual pupil information, subject to the Data Protection Act 1998, to named bodies and persons who, for the purpose of promoting the education or well-being of children in England are conducting research or analysis; producing statistics; or providing information, advice or guidance. The department may decide to share pupil and children’s information with third parties on a case by case basis where it is satisfied that to do so would be in accordance with the law and the Data Protection Act, and where it considers that such disclosure would promote the education or well-being of children.”

So if McDonalds wants to run a healthy eating campaign, would they qualify?

Open Data does not equate (must read) with being open with all of our data. Tables and summaries at aggregated level of statistics are nothing to do with individual level data. Before any Government body considers if they should enable private and other organisations to use data more freely and effectively, and their stance on charging and profit from use of data, they should think twice.

Remember the daft Deregulation Bill 162? It revokes the need to sell pre-packed knitting yarn by net weight and other nonsense. Perhaps it is the ‘Exercise of regulatory functions’ which is the root cause of much of these issues on the monetisation of our data:

Clause 63 provides a power for a Minister of the Crown to issue guidance on: how regulatory functions can be exercised so as to promote economic growth;

Sections 60-67 of the Deregulation Act currently passing through Parliament allow the removal of any regulation that conflicts with the interests of a profit-maker. If your body manages data, there’s really only going to be one way to meet the obligations of Bill 162. Sell it.

Someone needs to tell all the departments, if you have any chance at all of getting care.data through to the finish line, stop giving away or selling any of our personal data which we trusted you with for an entirely different original purpose.

Whilst there are many people working on many manoeuvres to get all the ducks ready to relaunch for care.data, the Government has to pay attention to the whole race. If we lose faith in the Government to make wise decisions on what will be done with all data we share for a given purpose and find later it is given to others without our knowledge, we won’t trust it with our health data. If the data warehouse may one day be sold off, then all the gameplanning and rules in between will appear to have been pointless.

This is not a race to the finish with the least bad option. Care.data needs to be exemplary if it is to have any chance of reaching the podium as the world leader in patient data-sharing management. It’s got one second chance to get a relaunch.

Without public trust it will flounder. Without GPs to patient communications thoroughly thought out it and funded, it is destined for a rough ride. Without further legislative changes, it’s not going far enough to be convincing of real commitment to change. Without these three, it will not reach the finish line.

The best summary of why we need still much work and how to respect so many of these under good governance, came out this week, from the Chair of CAG. “However, we cannot expect to have all of the answers in six months time. The commitment must be an ongoing one to continue to consult with people, to continue to work to optimally protect both privacy and the public interest in the uses of health data.”

So between Dr. Taylor and Dame Caldicott the wise seem to indicate more than 6 months is needed.

There are encouraging signs, but many issues don’t seem to be addressed yet at all, from the recent NHS England letter nor Framework Agreement. Above all, in common with the tax data sharing, pseudonymous is not equal to anonymous. It’s not only what HSCIC currently determines as identifiable, which we need vital improved governance to protect.

In any upcoming public communications, I pray don’t patronise the public saying that ‘name and address will not be extracted’ as the last FAQs and poster did. Explain instead what the Personal Demographics Service stores already, educate us how the PDS and linkage works and why. Details like this must not get lost in any rushed relaunch.

And other departments’ decisions must not put it in jeopardy.

Whilst care.data is getting its ducks in a row, the wider Government approach to data management seems to have gone, I can’t help but say, absolutely quackers.

——-

** 19th April Update: This via twitter comment says, if GPs get patient letters made available they only have to address them to send to their patient list. Will this happen in this case? Good news for informed communications? Let’s hope so.

Jen Persson's blog

Category Archives: communications

Care.data – my six month pause, anniversary round up [Part 1]

I won’t be unoriginal – RIP Robin Williams

Launching genomics, lifeboats, & care.data

care.data communications and core concepts [Part two]

If at first you don’t succeed – try, try again. But think about changes first.

Hear no evil, see no evil, speak no evil – the impact of the Partridge Review on care.data

Care.data – Getting the ducks in a row

Thinking to some purpose

Share

Share

Share

Share

Share

Share

Share

Share

Share

Share

Thinking to some purpose