art, surveillance, words

Happy [belated] Birthday Kafka

Yesterday, July 3rd, was Kafka’s birthday. I started to write about him, and fell asleep with a book in my hand, waking in Kafkaesque style this morning not knowing where I was or why. But thank goodness, I did not wake up as a beetle. [1]

The overly used descriptor Kafkaesque has more recently come to take  on a generic meaning, and his name  associated with a dark view of the state and surveillance. [2]  I wonder what he would have made of it?

The surveillance state is more contemporary than ever in mainstream thought, since Snowden, a year ago. We can look at The Trial, in which the protagonist is accused of an unknown crime, under assumed guilt and secrecy surrounding the process and reflect on the latest moves towards a secret court in the UK. In ‘The Great Wall of China‘ Kafka considered both points of the debate how to protect the People from outsiders, the Barbarians. As we see security at airports tightened today against an invisible threat, its central theme as valid today as in the 1920s, exploring the authority’s exploitation of fear and uncertainty over what constitutes a nation and what should be defended. In Das Schloss ‘the Castle‘ the authorities are drowning in documents, but cannot find the one which is relevant to the accused. Kafka questions the purpose of massive data gathering when the authorities appear not use the documents they collect. Both the latter stories mentioned in Alan Greenblatt’s article, on the Surveillance Society. [3]

His work is perhaps more relevant than ever.

As a Germanist, his work featured strongly in my studies, but I appreciate it more now, and am currently working on a project which is based in the time of his life (1883 -1924) and into the second world war.

It was both a fascinating and demanding time and place to live.

He was a German speaker living in what is now, the Czech Republic. The issues of identity and belonging are everyday ones for the residents like him, in a country whose borders were fluid and changing. Whose government switched the state language between Czech and German, and issued new passports in his lifetime, more than once, and in state institutions in which it was dictated how many employees should be of which – Czech or German – ethic origin. It is little spoken of today, but the fifty years before WWII set the stage for the struggle of ethnicity and its horrific consequence for millions of ordinary citizens in post war Czechoslovakia and its neighbours. The resulting forced migrations [4] of 3 million ethnic Germans from the Sudetenland alone, and the deaths of a disputed number in the region of half a million, and up to two million more who disappeared, is a little talked of consequence of the war and its preceding years.

He died before this, in 1924. His best known works are those in which the State, power, identity and emotional struggles are entwined in dark and often unexpected situations.

His work is ever popular, and his many themes, quotes and associated artwork are widely used. His concepts contemporary.

He was reportedly an avid reader, and advocated reading books which challenge:

“I think we ought to read only the kind of books that wound and stab us. If the book we are reading doesn’t wake us up with a blow on the head, what are we reading it for?”  

– from a letter to Oskar Pollak (January 27, 1904)

He inspires me to keep writing mine.

 

******

Artwork from the Schocken/Pantheon Kafka library, cover designer Peter Mendelsund

[1] Metamorphasis: http://www.sparknotes.com/lit/metamorph/ – one of Kafka’s best known works

[2] Salon’s view of the NSA’s Internet surveillance program and how it uses Section 702 of the FISA Amendments Act.

[3] Alan Greenblatt article, Our Surveillance Society – What Orwell and Kafka might say –  June 2013 http://www.npr.org/2013/06/08/189792140/our-surveillance-society-what-orwell-and-kafka-might-say

[4] Forced migrations of ethnic Germans in post WWII http://en.wikipedia.org/wiki/Flight_and_expulsion_of_Germans_%281944%E2%80%9350%29

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

care.data communications and core concepts [Part one]

“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.

ipsosmori_q4know

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:

Care Act 2014My 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]

1706datauses

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]

“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]

1984Other 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 :

Care Act 2014****

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.

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

3wisemonkeysThe 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.

Care Act 2014At 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

cooking, not health, sport, travel

Suarez, Sweets and Foreign customs

When England play Uruguay this week,they might be hoping the Southern American team’s secret weapon may have been taken away.

Not one of the world’s best players whom we know from playing at Liverpool, Suarez, but the team supply of dulche de leche, as the BBC reported:

“Brazilian officials say they confiscated 39kg (86lb) of caramel spread from Uruguay’s football team as it arrived in Brazil for the World Cup.”dulce de tres leche - 3 milk dessert

I first discovered dulche de leche when a friend in South America brought me back two jars. She was a very good friend.

It’s a caramelized milk product, made by mixing milk with sugar, baking powder and vanilla extract. has the consistency of a thick sticky nutella and is found in many desserts and pastries from the region.

At the time, I ran a cupcake company and so the Dulche de Leche based, Salted Caramel cupcake was born.

But nothing has ever tasted as good as the Torta de Tres Leches I had in Santiago in 2013. So good, it was worthy of the photo above. Mind blowingly sweet, but with a saltiness and lighter-than candy floss sponge, it is a blend of taste and consistency I’ve never had before or since. I can recommend making your own.

I doubt the footballers have time for cake though, so I do wonder what they used it for? Breakfast spread? I should think their diet regimes are planned to the nth degree based on nutritional values.

Answers on a postcard please…

*******

Ten recipes using the South American speciality.

choice, commercial, empowerment, trust

What our grandparents called it.

I regularly talk with friends about food. Often over food. I like food. I like cooking. And as a result tend to use as unprocessed-as-possible ingredients, and start most things from scratch.

I have friends who can’t cook, or won’t cook, and I have friends who like the paleo direction, as I do. There is no right answer. But I do think that whatever we use to prepare our meals, we need to be aware of how it is packaged and marketed, in making our choices.

Some labels have more meaning than others. Fairtrade. Farm fresh. Or Red Tractor. Labels which look and sound good aren’t always exactly what they say on the tin, or what we think they mean. Or they mean different things in different countries. Like ‘Bio’ often conflated with organic.

Why do we need these packaging terms at all? Are they all genuine, of substance and meaningful for consumers, or are they marketing ploys?

I think often, on closer inspection, we may find these marketing labels are used to segment the market and make those who can, pay more for ‘better quality’ and ‘choice’ . It does not necessarily mean there is much  substantive difference behind the label.

Consumers should in theory drive the market by buying what we want. But do we know what we want or are we led by marketing?

Are we nudged in the direction of the product the vendors want to sell us though clever marketing?

The total 2013 UK advertising spend reached a new high of nearly £14bn, topping pre-financial crash levels for the first time in six years. Companies must think that is money, worth spending.

How free is our choice?

I would like to think we collectively focus on the core value of what we want as a consumer not just for ourselves but for society. Decent, affordable, production aware, nutrition for all.

However reality is that those who can afford choice, worry whether it is organic or bio, chemical free or free range. Those who cannot afford it, are left with the ‘value’ ranges. It’s never marketed as ‘the cheapest option.’

When I was a teen in school, “Home economics,” classes were compulsory but the content changed to become focused on things we were ‘all’ ‘capable of’ – homemade pizza for example.  Now we ask ourselves why are so many of our generation and their kids obese? We seek solutions for weight management. Could we not go back to basics, and fix the root cause – teach all of our kids to cook, and I mean, simple, real, food? Teach us all to understand food labels. Accompanied by a living wage for all, we could both eat more simply and I believe it would make savings in health benefits.

We need our children educated not to fall for marketing without understanding it.

Uninformed, we cannot make informed choice.

Our food and our health and inexorably linked.

When it comes to healthcare, we keep hearing labels, and ‘choice’, and it’s wrapped in plenty of packaging. Patient empowerment. Personalised medicine. Patient centred care. I do wonder if we don’t over-complicate simple things.

Can care be anything else *but* patient centred?

Let me ask the question – could we consider just going back to plain language. Without having to put it through ‘Plain English’ first? Patients need care. From other people. Professionals in whom we trust. Drop the patient-centric, patient-led language.

Let’s just have, as our grandparents used to call it, [1] ‘care’.

Don’t misunderstand me. I am passionate about patient and citizen participation. It’s why I have spent all my free time of the last ten months understanding care.data and the recent NHS market changes. But it’s the way it is packaged to us, I would like more people to explore and to question whether we really need all the outside layers, or whether it detracts from the most important questions.

Is all the talk around patient-centric really a move towards passing responsibility for payment?

Most people are responsible in their own healthcare as far as they can be. When we can help ourselves, we mainly do. Most people actually are not that good at asking for help, even when they need it. We like to be self-reliant. We know we could eat better, drink less, exercise more.  We know we need to manage our treatments and lifestyle. We do, and honestly, if we don’t always do it, it’s not going to help us by repackaging the responsibility, which we know we already have. The majority of people are as responsible as they feel able to be.

Many are pushed to their limits in society of how much more responsibility they can take on. They struggle to feed and care for their families, and don’t ask for help until they really have no other option. We may not want or be able to take on extra responsibility. When we are vulnerable, we trust others to help us.

Choice in those circumstances, is a luxury that’s not high on the priority list.  Choice becomes a catchphrase, not a reality. It’s not just that for everyone, but that’s the point. Choice becomes open to some, and closed to others. Some can choose organic, others are left with the ‘value range.’

It’s not perhaps PC to stand up and ask this of everyone with the best of ‘patient-centred’ intentions.  I love and commend the intentions here.[2]

I love the spirit that patient leaders intend to ‘enable’ patient empowerment, but what does that really mean?

To me, it infers the belief we patients have no power and therefore no responsibility, right now. It infers we need some seismic shift in current care. I disagree. Care in which I have been involved has always been about a co-operaton between the professional and patient needs, and respectful. It’s what our professionals *do*. It’s  already a partnership of trust and we trust professional opinion to take much of the responsibility for our care, in our best interest.

Yes we can get labelled as a bed or a surname. Yes, there is always room for improvement. Some have had awful individual experiences. It is perhaps a luxury of relativley good health that my family has experinced simple and good care, and perhaps it is for those who have more complex conditions that the system must focus improvement.

But are we not in danger of getting so focused away from care and on the patient-power as marketing jargon that we forget that the patients are simply, people, in need of professionals, who care?

We lose focus on asking how is the delivery of that care being supported by those responsible for it, from the top down?

Are we so focused on the solution, and this drive for change, that we are not asking, what is the root cause behind this need?

When we hear farm fresh and bio, we tend to conflate them with healthy, and better for us. If a package says tomatoes, vs bio tomatoes, which do you go for? But just the word ‘bio’ may be a meaningless marketing term. It’s a promotional tool, to make us want it. It is not the same as regulated words which mean not chemically treated, for example.

And so it is with health.

In all this ‘talk’ of patient power, is the real deal deliberately obfuscated?

Being told we should have choice,  is to make us want something, demand something, create a demand in patients that in fact, we may not want at all, but start to believe we do.

Is there really a patient desire across so many of us for choosing our own hospitals or do we not just want to go somewhere near, which our families can visit to get good care? Reducing monetary inefficiences is becoming conflated [3] with overall improvement – seeing care only as a supply chain product.

Is there really a need for the drive for ever more comparison data between consultants and between GPs which we are told supports ‘choice’?

Is a market being created, for which there is little public desire?

In a market driven by payment-by-results, fewer patients can mean fewer pounds. GP Boundaries are due to be abolished in October 2014.  More GPs are going to be forced to close if nothing changes in funding. Or they amalgamate or are taken over by corporate private management, like this practice. [3b] ‘Choice’ may exacerbate these changes. And it was foreseeable, as Sir Kinglsey Manning predicted in 2006 in the Inevitable Decline of the GP Partnership. 

Are we being manipulated into wanting what others want us to want? Is the patient-centric conversation keeping us distracted from the overriding factor in current policy – the drive from top-down to cut costs? The choice made by Government to create a gap between need and what is being provided from the public purse strings?

Between the 2012 Nuffield Report [4] and today’s £30bn, there must be reliable numbers somewhere. As a lay patient, it’s hard to know what is reliable and how to get an informed understanding.

It will be even harder to make a patient choice, if there’s no money available to offer any services to choose from.

If we can’t afford to be self-payers, privately insured, what then? This is the real impact patient choice will have. Some will have choice, and many will have none. Some will have care, and many will have none.

We will have facilities closed, which cannot offer care. And facilities open, where patients cannot afford to go.

Twenty years on, Yes Minister still makes me laugh. It’s possibly even less PC now, than it was then. But are some of the storylines still relevant? Perhaps more than ever.

“Get rid of 300 of your people, and get some doctors, and nurses, and get some patients.” | Yes, Minister – the Compassionate Society

We hear now increasingly of the secondary care closures, and the looming primary care crisis in GP recruitment and we ask, what shall we do?

We need to stand up and demand fixes for the root causes and not pussy foot around with words and the PC solution to an artificial need, which avoids the basic issues. Shortage of cash and staffing.

Patients must better understand the changes in this market creation for it to work – but not all change is equally good

University fees still make studying medicine expensive, even if part supported. GPs are not always, contrary to some media-hype, the best paid in medicine. It is interesting to look at a study in the unit costs of health and social care [5]. When students draw towards the end of their expensive studies it is unsurprising many look for the best paid jobs and specialisms may appeal.  I recently spoke with one mid-year student about her future and she was looking at brain surgery or psychology. The reason? She thought GPs in the future of the NHS was ‘too unpredictable’.

The seniority pay system has been scrapped for new entrants and reduced for those already in, so they can’t look forward to natural salary progression with really good benefits later on either.

Top and tail, the profession has been hacked off, in both senses.

Against a backdrop of regular undermining like the ‘maggotgate’ scandalous misrepresentation in the media, top-down imposed changes have been a heavy burden on GPs who continue to put patients first and care for us.

They’re coping with  a technical support system [6] under constant tinkering with its admin processes which may not offer any local benefit, changes to core work [7], potential outsourcing [8] and job losses, the destabilisation of support, and both increased marketisation [9] and general lack or stalling of funding since 2010. [10]

And that’s only from an outsider patient’s point-of-view. Patients, ask your GPs.

It feels to me very much as if ministers want to pass the buck (pun intended) back to patients – if we’re responsible for the management of our care today, we’ll likely be responsible for the cost of it tomorrow.

The concept of promoting patient choice, of patient-led decision making though fundamentally not flawed, deflects from the responsibility of others in care provision. It suggests that the patient is to be solely responsible. There are of course aspects of care we can and should manage ourselves. But I don’t feel this is the primary driver of the initiative, in annual reports and roadmaps. It is all about budget, lack of budget and reduced budget.

“Choice” has become the marketing watchword to package the market force of competition to patients.

It has driven wedges between services and broken others apart, causing the lack of integration which is the very thing they now purport to be key to success in health and social care.

A decentralised, and broken up market is easier to manage by private providers, choice for patients exists only by having multiple providers, which only works if you first break up the NHS single delivery model.

We are told that we are to be risk-stratified this year in GP practices, taking our patient records and analysing them at the practice, CCG or Health and Social Care Centre approved site. By segmenting groups who will be most at ‘risk’ and therefore need higher levels of care, they will also assess those who cost the most. These segments focus for example on COPD, Diabetes, Stroke, and the over 75s repeat hospital admissions.

I worry that there are many vulnerable, such as mental health patients, whose segmentation will stigmatise and put them at risk in ever smaller funding pools.

The idea of personal budgets is a slippery first step, to segmenting out treatments and patients who may or may not be covered by NHS care.

An individual budget, a personal shopping basket, can more easily be analysed by a health insurer for example, or simply reduced by the State to be able to buy less at the State till, without topping it up with our own private contribution.

Over 40% of social care users in England [12] are managed in this way. Social care where the issues of AQF have come well documented, as private providers seek ever to reduce costs.

We are rapidly losing control of that social care market. US investors are snapping up the profitable parts of the sector, with the long term prospect of the wealthy self-pay areas provided for by US investors [13], and the poorer local authority-paid homes? well, we’ll wait and see.

Many elderly are left with ‘the cheapest option’. They may or may not think that it is good value.

If patients are empowered as the new consumers in the healthcare market, we need to speak up for what we want

Let’s cut out all the PC talk and talk to government about getting university (medicine) fees reduced or cut. Stop any new reforms and let the profesionals get on with their job of caring. Let’s cut down on the promotional packaging, and management consultant-speak in healthcare. Drop the patient-led, patient-centric. There are pages and pages in brochures on patient empowerment but patients, we need a bit more revolt, questioning why these changes are needed and what is the root of change required. As so wonderfully put recently, we need ‘revolting patients.’ (p.19) [11] We need patients putting first, but let’s first focus on the care.

Care. That’s what matters. It’s that simple. Not patient empowerment, centric or led packaging and labels. Not parcels of personalised care budgets, packaged as ‘gifts’ and choice to us.

We want as patients for our care and the support of the system of our care to be at the centre of focus.

We need the state to manage that there is enough money in the pot to provide a duty of care for all, fairly, and provide  enough trained professional staff to do so.

There is a darn big hole predicted of £30bn between planned spend and need. It’s not going to all come from savings from thin air, nor to pay for itself, so patients, who do you think the Government is expecting to pay for it?

Changes have already been made in what is ‘free on the NHS’ i.e. possible to prescribe, such as hearing aids, other areas may be under discussion, for example in kidney dialysis.

Patients, we need not be ’empowered’ to wake up to the marketing ploys. Speak up, or we are complicit in our own downfall.

Is this the best path for care in this country, or is it a policy underpinned by an  ideology which has removed the Secretary of State’s Duty of Care [14], a duty to provide, and replaced it with a duty to promote?

“The Secretary of State must continue the promotion in England of a comprehensive health service.”

Let’s challenge the drivers of marketing speak and the market based health provision. A market inevitably leads to those who can afford it, having the choice. And those who can’t, are left with the ‘value’ range. They may be left with nothing at all when they need it, if the duty of care, has been replaced with nothing but promotion.

NHS patient empowerment is like buying organic. It’s a false choice. In a system designed to have fair access for all, we should not look to segment the patients, seen as consumers, into those who can pay the most for choice, and those who cannot afford to.  Nor should we only see the benefits of personalised budgets.

Let’s ask to talk about the basics. Let’s focus on the care and providing enough funds to do it right. At patient events we need to ask what are the planned costs and where is the budget for them? What is about to be merged with Local Authority budgets for social care? What is ring-fenced and what is not? Where will decision making lie in a merged future?

Where is the Social care and Health Strategy and the benefits plan – have you seen one? I haven’t.

Let patients be patients, and professionals get trained and supported to do their job.

Government, of any colour, must ensure responsibility for the duty of care is not passed along the supply chain. These issues are cross-party and cross parliamentary terms.

The NHS belongs to us all, and should be there, for us all, and not create a three-tiered consumer market in health. Those with choice, those with state care from the ‘value’ range’, and those with neither.

Yes, Minister? [15]

********

[1] Ken Loach made Interviews on the birth of the NHS http://www.thespiritof45.com/Interviews-Archives/Health

[2] Prioritising person-centred care – the evidence http://www.nationalvoices.org.uk/evidence

[3] Wall Street Journal – blog – How Eliminating Inefficiences Can Elevate Hospital Pharmacy As A Strategic Asset http://online.wsj.com/article/PR-CO-20140506-908700.html

[3b]  Privatisation behind an Invisibility Cloak – blog by Dr.David Wrigley http://drdavidwrigley.blogspot.co.uk/2014/06/privatisation-behind-invisibility-cloak.html?m=1

[4] the 2012 Nuffield Report- The funding pressures facing the NHS from 2010/11 to 2021/22

[5] Unit Study in Health and Social Care http://www.pssru.ac.uk/project-pages/unit-costs/2013/index.php

[6] Fears for QOF funding as NHS draws up contingency plans to pay GPs from next month http://www.pulsetoday.co.uk/your-practice/practice-topics/qof/fears-for-qof-funding-as-nhs-draws-up-contingency-plans-to-pay-gps-from-next-month/20006085.article
[7] Pulse: Dramatic’ changes to GP contract by next April as Hunt spells out detail of general practice reform, 12 Sept 2013 by http://www.pulsetoday.co.uk/home/gp-contract-2014/15/dramatic-changes-to-gp-contract-by-next-april-as-hunt-spells-out-detail-of-general-practice-reform/20004293.article
[8] Primary care contracting faces cuts and outsourcing, 5 Nov. 2013 by http://www.hsj.co.uk/home/commissioning/primary-care-contracting-faces-cuts-and-possible-outsourcing/5065021.article
[9] NHS shakeup: Private companies see potential to expand their role – Denis Campbell, July 2010 – Firms aim to to gain unprecedented foothold in healthcare system once GPs start spending £80bn of NHS funds – http://www.theguardian.com/society/2010/jul/12/nhs-private-companies-gps-funds
[10] GP Online – Cuts to enhanced services across England will wipe out slim uplifts to GP contract funding agreed for 2011/12, a GP investigation reveals. By Stephen Robinson on the 19 October 2011 www.gponline.com/exclusive-practices-face-28000-service-cuts/article/1099085
[11] Reflections – Have we empowered patients Essay: p.19 Jeremy Taylor, Chief Executive, National Voices
[12] A report by the All Party Parliamentary Groups on Global Health; HIV/AIDs; Population, Development and Reproductive Health; Global Tuberculosis; and Patient and Public Involvement in Health and Social Care – May 2014 – http://www.patientsorganizations.org/attach.pl/1786/2114/APPG%20Global%20Patient%20Empowerment%20Report.pdf
[13]  Social Care – US investors snap up UK care homes, FT, June 10, 2014 – by Gill Plimmer – http://www.ft.com/cms/s/2/6da9f5bc-f08d-11e3-8f3d-00144feabdc0.html#axzz34kzPdWXd

[14] Health and Social Care Act 2012 http://www.legislation.gov.uk/ukpga/2012/7/section/1

[15] Yes Minister – “The Compassionate Society” (se2 ep1)
Created by Antony Jay & Jonathan Lynn. Broadcast February 23, 1981 – http://www.youtube.com/watch?v=x-5zEb1oS9A

 

 

#caredata, care.data, commercial, confidentiality, HES, HSCIC, NHSEngland, scope, transparency, trust

Flagship care.data – [2] Commercial use with the Brokers

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“If our health records should sail off in the flagship care.data programme, on the sea of commercial Big Data, are we confident that there is consent, fair processing, transparency, accountability, security and good governance? We must know that these basic mainstays are in place, to give it our support.”

“He that filches from me my good name, robs me of that which not enriches him, and makes me poor indeed.”                     William Shakespeare, Othello

I read this Shakespeare quote last week, not in the original but in the statement Data Brokers: A Call for Transparency and Accountability by US Commissioner of the Federal Trade Commission Julie Brill, May 27 2014. [1] . Since then I have tried to piece together a lay consumer understanding, of how this commercial data market works and how our health records fit in. Experts in data markets and many others will undoubtedly see how naïve it is. But by sharing my ordinary understanding as a mother who is thinking about the impacts of my shopping habits and upcoming care.data decision will have on my children’s future, perhaps I can highlight how trusting we are, and why those governing our data need to ensure the processes around our data are worthy of that trust.

The Commissioner begins:

“Data brokers gather massive amounts of data, from online and offline sources, and combine them into profiles about each of us. Data brokers examine each piece of information they hold about us – where we live, where we work and how much we earn, our race, our daily activities (both off line and online), our interests, our health conditions and our overall financial status – to create a narrative about our past, present and even our future lives. Perhaps we are described as “Financially Challenged” or instead as “Bible Lifestyle.”

Perhaps we are also placed in a category of “Diabetes Interest” or “Smoker in Household.” Data brokers’ clients use these profiles to send us advertisements we might be interested in, an activity that can benefit both the advertiser and the consumer. But these profiles can also be used to determine whether and on what terms companies should do business with us as individual consumers, and could result in our being treated differently based on characteristics such as our race, income, or sexual orientation. If data broker profiles are based on inaccurate information or inappropriate classifications, or used for inappropriate purposes, the profiles have the ability to not only rob us of our good name, but also to lead to lost economic opportunities, higher costs, and other significant harm.”
In other words, organisations, which we may not know store our personal, sensitive or confidential data, use it to classify, segment  and label us. In this environment when third parties it seems know more about us than we may know ourselves, it would seem prudent to want to control and understand what data is held by whom and how they use it. Especially, if in her words, “the profiles have the ability to not only rob us of our good name, but also to lead to lost economic opportunities, higher costs, and other significant harm.”

This is why it matters what is being done at break-neck pace to extract and share our health records in England.

I believe we are not yet sufficiently aware of how our data is used by these intermediaries, and if we were, we’d be horrified. We are complicit consumers in how our data is used with minimal understanding. We’re prepared to unwittingly trade a little privacy with the supermarket, to get our discount vouchers through the post. But we don’t look beyond that to understand what price we are paying and how our commercial interests may be harmed, in much more significant ways than £10 discount or a Legoland entry may compensate. Just like our food, the public are complicit [2] in our own downfall, accepting the marketing spin. We don’t understand credit ratings [3] and risk scores, and even if we do, most consumers don’t know data brokers offer companies scores for other purposes unrelated to credit in an onward chain of reselling. Data can be inaccurate, we are unaware of how to manage or correct it, how we are labelled by it, what opportunities it may restrict as highlighted in the report. We should be better informed.

I’ve recently learned how these, “powerful cross-channel consumer classifications help companies understand the demographics, lifestyles, preferences and behaviours of the UK adult population in extraordinary detail.” [4] demonstrated by Experian.

That they understand and track my behaviours probably better than I do, and at such detailed level, I find surprising and invasive. “Within rural areas we are able to pick out the individual households that are likely to be commuting to towns and cities nearby…” I’ll go more into that later.

It has come to the attention of the general public,  only in the last 6 months, that our hospital episode statistics (HES) and data from other secondary care sources, have been on sale in this consumer market. As I said in a previous post [5], a year ago, in April 2013, The ‘Health and Social Care Transparency Panel’ discussion on sharing patient data with information intermediaries stated at that time, there was no legitimate or statutory basis to share at least ONS data [6] in that way for commercial purposes:

“The issues of finding a legitimate basis for sharing ONS death data with information intermediaries for commercial purposes had been a long running problem…The panel identified this as a significant barrier to developing a vibrant market of information intermediaries.”

The HSCIC at that time saw a “vibrant market of information intermediaries, for commercial purposes” using our personal records as desirable and indeed, as Sir Kingsley Manning’s comments to the Health Select Committee demonstrate, in their DH handed-down policy remit.


In this way, companies who process data such as Beacon Dodsworth received data in the last year and offered it for commercial exploitation by others “HES data may be used by pharmaceutical companies “to improve [their] social marketing / media awareness campaigns”. Others included  OmegaSolver [7] and Harvey Walsh [8].


Some of that data goes back into our health market as business intelligence, both for NHS and private use, for benchmarking, comparisons and making commercial decisions. In our commissioning based marketplace [9], now becoming normalised.

Through the press earlier this year, and the first data release register [10] we have come to understand in part, who is using it and at least in part, how. Aside from bone fide public health planners and health researchers, and the intermediaries using data for commissioning support tools, recipients include these commercial companies and third-party intermediaries exploiting the data as a commodity. Organisations which may buy raw data and sell it on, or process it and sell that data mined information onwards. Organisations after which, Chair Kingsley Manning told the Health Select Committee, [11] we have no idea whom all the end users may be. He indicated the progress that is needed and that HSCIC is already working on improvements, stating the view that “the process HSCIC inherited was no longer robust. ” Q285

“Kingsley Manning: I realise that, and may I come back to that? That is why, specifically with regard to the sets of data that are covered by data-sharing agreements, I took the view that the process that we inherited was no longer robust. We have therefore been in the process of changing the management and the processes, and we have voluntarily adopted a process of being much more transparent about the process and about the data releases we have made.

              Q286Barbara Keeley: But what I was trying to get to was the concern.  We are just looking for transparency and honesty here. On all the data that was previously released through these commercial reuse licences where there are end users—the question that the Committee wanted to put to you—you are unable to say what are the uses to which the data release under those licences may be put, what controls are in place and what information is provided—you don’t know. With the whole 13 years of the HES database and however many million records have gone out to one of these providers that then provides on to others—in the United States, this has involved putting up the data on Google cloud, and we are not sure of the security of that—you can’t say. You should admit it now. If you can’t tell us where all that data is and what all its uses are, it seems you can’t. You have already admitted that entirely commercial market uses—

              Kingsley Manning: The control is through both the overriding regulations established within the Data Protection Act and the data-sharing agreements that we enter into with people, which specifically allow the reuse of data with safeguards with regard to anonymity.

              Q287Barbara Keeley: So you have no idea who the end user is. You have no idea if they are using it properly because there is no audit.

              Kingsley Manning: And that is in accordance with the law and the regulations as they stand today.

              Q288Barbara Keeley: So, just to be clear, audit is not going to be possible for all the uses and all the end users. The data is out there. You have licensed people to use it and other people to buy it, and there is no control over that—it is just out there.

              Kingsley Manning: I don’t accept there is no control. There is control established in accordance with law and the regulations as they are today.

              Q289Barbara Keeley: But you are not able to say who is using it and for what reason. You are not able to say that.  There are end users out there.

              Kingsley Manning: No, because we have a large range of organisations that we have been encouraging. Government policy has for a long time been to encourage the use of this data to advance both the health and social care system in this country and the economy. If, for example, we supply pseudonymised data to a drug company to help it to develop a new drug, we do not know the end users beyond that organisation, but that is perceived as being a task and a function that we have. It is done in such a manner that the data is safe and secure, and is not identifiable back to an individual.

              You may wish to change the base upon which we act. We absolutely welcome the suggestion that we should submit these to the confidentiality advisory group. We have identified a number of cases where we think its guidance would be very helpful, including in this area. We would absolutely welcome that, but I am afraid we cannot make up the rules that we act by.”

This is what concerns me, if the purposes and permissions granted for care.data are to be defined by the reason why recipients get data for the “promotion of health ” [12] and that their worthiness to receive data is based on,  a wooly, undefined notion of whether it will improve care or promote health. It cannot be transparently judged if many users of data are intermediaries with re-use licences, if even the HSCIC doesn’t know who all the end users are, and does not routinely audit them. Nor can anyone know how identifiable therefore the accumulated data sets may be.

If HSCIC does not track each release, each time, each recipient receives data, how do they know every time a new request is granted, how much of the jigsaw puzzle for any given individual, is left to complete?

If you don’t know who they are, how can you govern them and what they do with our data? How on earth can anyone judge how they will be for purposes in the Care Bill 2014 of:

(a)the provision of health care or adult social care, or

(b)the promotion of health.

How can the data controllers judge whether that  release, together with all the data these companies already hold, will not do us ‘significant harm’  in the words of Commissioner Brill, of the Federal Trade Commission? Will it not by its nature of labels discriminate against segments of our society, whom the data owners select, based on information beyond our visibility or control? Is society which is segmented and stratified at risk of every increasing inequality? Disability groups for example, may feel at increased risk of stigma or exclusion. David Gillon [13] addresses this in his post here. How can individuals determine if releasing our data to these companies is in our own, or the public interest [14]?

Impossible if we don’t know who they are, and we don’t know what they already hold. A model which is hardly transparent nor conducive to trust.

Dr.Neil Bhatia in Hampshire, a GP who founded the non-commercial website care-data.info, asked HSCIC in an FOI request for the data *about him* which was released to these type of intermediaries. He was told this week, that the data controller, the Health and Information Centre, does not know. We can then only surmise, if our individual data was contained in pseudonymous bulk data transfers in which there remains ‘a latent risk’ of identification. So from the released data register, we should look at what types of companies are using pseudonymous data. We are also told that penalties may be imposed, or even ‘one strike and you’re out’ for misuse of data. Until now at least without robust audit procedures, I believe we’d never know. So how could data be better secured?

There is talk of a ‘fume cupboard’ access, [15] or giving customers data only in query format, instead of giving out raw chunks of the database. But the Care Bill certainly didn’t legislate for any changes in those types or indeed any governance procedures. We can only wait and see if talk becomes reality and how we can trust it becomes a secure policy and stays so, after we entrust our data. There is no delete button after all.

The Secretary of State wrote on April 25th [16], asking to ensure current practices are up to the task, but as polite as it is, a letter is no form of governance. On June 12th, HSJ [17] reported that the HSCIC has ordered a significant number of trusts to “promptly” delete a series of datafields, which it claims could put patients at risk of being identified, because some of the information in “secondary uses service” that they had submitted to the agency had been entered in an incorrect way over ten years. The good news in this, is it would appear progress is being made in audit, and these errors are being addressed.

However, it highlights the issue created when you release raw data beyond your control. It will mean that organisations who should not have received data, did. How now is that data to be removed from information into which it has become? It will now no longer be raw numbers, but be in graphs, comparative studies and have been inexorably merged with other data. Unlike Cinderella’s carriage, it’s not an automatic process that the raw materials, the data, returns to its previous state after it has become enhanced, turned into business intelligence. The raw files may be traced, removed and deleted, but the knowledge it has turned into, will be almost impossible to find and delete. The links between the two may have disappeared into thin air. Harder to find, than the owner of the glass slipper. An impossible audit trail.

An audit process on leaving the trusts and upon arrival at HSCIC and on leaving HSCIC – at least a three place checkpoint – is what I would have  been familiar with in the past for payroll & personal data. It seems that audit procedures for our health records, have just not kept up with the speed at which the data has been sent out on the open seas, and there has been no audit.

“Q287Barbara Keeley: So you have no idea who the end user is. You have no idea if they are using it properly because there is no audit.

  Kingsley Manning: And that is in accordance with the law and the regulations as they stand today.”

It’s not to say there are no controls. We are told that data sharing agreements prevent data provided being matched with other data held, which prevents making individuals identifiable. However, as I’ll look at in my next post, I don’t think it even has to get the the person level to be sufficiently identifiable as to be discriminatory. The segmenting of society at group level, at household level, with detailed understanding of our behaviours, is sufficient, aside from the identifiable individual level data these companies hold for identity verification and so on. When companies extract and store raw data, we have no idea where and with whom it lands up. I’ve been completely surprised by what I have learned in the last few weeks how these third parties use our data.

The current controls around and governance of our health data remains unchanged by the Care Bill.  Through policy, law and directions the HSCIC has

…”licensed people to use it and other people to buy it, and there is no control over that.” [12]

As Sir Manning said,

…”because we have a large range of organisations that we have been encouraging. Government policy has for a long time been to encourage the use of this data”

Controls may be in line with policy and the law, but I believe it simply hasn’t kept up with the functional need for a decent governance framework.

Julie Brill’s Statement made a recommendation:

“A second accountability measure that Congress should consider is to require data brokers to take reasonable steps to ensure that their original sources of information obtained appropriate consent from consumers.”

Accountability in the UK of these data brokers seems quite absent in real terms, unknown to the public at large.

The same core issue identified by Julie Brill in the US, lack of informed consent. If we don’t know you have it, how can we ask to check if it’s correct or who uses it? In an era of borderless electronic data transfers, we should seek to put in place the highest standards as common denominators, and in terms of privacy, there are lessons worth learning from the US actions post Snowden which in the UK, we have not yet begun.

If our health records should sail off in the flagship care.data programme, on the sea of commercial Big Data, are we confident that there is consent, fair processing, transparency, accountability, security and good governance? We must know that these basic mainstays are in place, and will stay so in future, to give it our support. Well governed data is more likely to get our trust, therefore our consent and be of better quality for buyers.

We must also not forget to clarify why it is our records are needed in the broad and undefined care.data scope that we still have not seen pinned down. Is the public good really defined for care.data and does it outweigh the private long established rights of consent and confidentiality? Do we trust these commercial company uses to do “no harm” as the US Commissioner of the Federal Trade Commission examined?

…”the profiles have the ability to not only rob us of our good name, but also to lead to lost economic opportunities, higher costs, and other significant harm.”

When we visit a medic we are vulnerable, ill or in need of help. We entrust our knowledge in confidence, and trust it will be used for our care. A whole hotchpotch of other indirect uses, including commercial exploitation is not what we expect. We need to trust the data we give away to local staff,  is processed appropriately all the way up the data chain, when it is stored, when it is released and beyond. For now at least, it appears citizens can only control the one point at which we first give our data up. After that, we have faith that those governing our data ensure the processes around its management are worthy of that trust. The governance processes that go beyond the HSCIC control, will directly influence that trust, and our care.data decision to object, or not.

For citizens to see this still precarious commercial hull, and trust that our innermost confidences should be safe within it, is stretching our trust, just a little too far.  The knowledge of our health and lifestyle should not be commercially exploited in this uncontrollable marketplace by data brokers without our knowledge and consent.  Health data is on the cusp of including more widespread biomedical data. In my children’s lifetime that may be a whole new era of data management to contend with. For now,  all this intensive data mining may be much more than we already imagined and we should carefully consider how society will be affected if it includes every aspect of our health and lifestyle data. It may be yet another aspect of individual surveillance more than society can stand.[18]

The care.data storm may not yet be over.

*****

In part three on commercial uses, I’m going to explore, from my lay perspective, on how some of these intermediaries and data processing companies, use data concretely in practice. As Julie Brill says how these intermediaries, “create a narrative about our past, present and even our future lives.”

******

[1] Data Brokers: A call for transparency and accountability – http://www.ftc.gov/system/files/documents/public_statements/311551/140527databrokerrptbrillstmt.pdf

[2] Food Marketing film by Catsnake with Actress Kate Miles via Upworthy  http://www.upworthy.com/no-one-applauds-this-woman-because-theyre-too-creeped-out-at-themselves-to-put-their-hands-together

[3] Your Credit Ratings explained BBC http://news.bbc.co.uk/1/hi/business/2963580.stm

[4] “Mosaic is Experian’s most comprehensive cross-channel classification system …it helps you understand consumers in extraordinary detail.” http://www.experian.co.uk/marketing-services/products/mosaic/mosaic-in-detail.html

[5] Flagship care.data – Commercial Uses in theory: https://jenpersson.com/flagship-care-data-precious-cargo-1-commercial-uses-in-theory/

[6] Health and Social Care transparency panel:- minutes from 23rd April 2013 –  https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/259828/HSCTP_13-1-mins_23_Apr_13__NewTemp_.pdf

[7] 17th March Omega Solver in the Guardian, by Randeep Ramesh http://www.theguardian.com/technology/2014/mar/17/online-tool-identify-public-figures-medical-care

[8] 16th March Harvey Walsh in the Sunday Times by Jon Ungoed-Thomas  ‘healthcare intelligence company, has paid for a database’ http://www.thesundaytimes.co.uk/sto/news/uk_news/Health/article1388324.ece

[9]  The Privatisation of the NHS Prof.A.Pollock at Tedex event

[10] HSCIC Data Register http://www.hscic.gov.uk/dataregister

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

[12] Care Bill 2014 – Enacted: http://www.legislation.gov.uk/ukpga/2014/23/section/122/enacted

[13] care.data in their own words – D. Gillon Where’s the Benefit? http://wheresthebenefit.blogspot.co.uk/2014/03/caredata-in-their-own-words.htm

[14] Public vs Private interest – Dr. M Taylor, “Information Governance as a Force for Good? Lessons to be Learnt from Care.data”, (2014) 11:1 SCRIPTed

[15] Fume Cupboard access in NHS England stakeholder  letter April 14th 2014

[16] Letter from Jeremy Hunto HSCIC regarding patient confidentiality

[17] Health Service Journal, June 12th, Nick Renaud-Komiya, http://www.hsj.co.uk/news/trusts-ordered-to-delete-incorrect-data/5071902.article?blocktitle=News&contentID=8805

[18] John Naughton, Observer 8th June, http://www.theguardian.com/technology/2014/jun/08/big-data-mined-real-winners-nsa-gchq-surveillance

#caredata, communications, leadership, Tech, transparency

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

Richard Feynman
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

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?

Thinking to some purpose