The care.data engagement – is it going to jilt citizens after all? A six month summary in twenty-five posts.

[Note update Sept 19th: after the NHS England AGM in the evening of Sept 18th – after this care.data engagement post published 18hrs earlier – I managed to ask Mr.Kelsey, National Director for Patients and Information, in person what was happening with all the engagement feedback and asked why it had not been made publicly available.

He said that the events’ feedback will be published before the pathfinder rollout begins, so that all questions and concerns can be responded to and that they will be taken into account before the pathfinders launch.

When might that be, I asked? ‘Soon’.

Good news? I look forward to seeing that happen. My open questions on commercial uses and more, and those of many others I have heard, have been captured in previous posts, in particular the most recent at the end of this post. – end of update.]

Medical data has huge power to do good, but it presents risks too. When leaked, it cannot be unleaked. When lost, public trust cannot be easily regained. That’s what broken-hearted Ben Goldacre wrote about care.data on February 28th of this year, ten days after the the pause was announced on February 18th [The Guardian] .

Fears and opinions, facts and analysis, with lots and lots of open questions. That’s what I’ve written up in the following posts related to care.data since then, including my own point-of-view and feedback from other citizens, events and discussions. All my care.data posts are listed here below, in one post, to give an overview of the whole story, and any progress in the six months ‘listening’ and ‘engagement’.

So what of that engagement? If there really have been all these events and listening, why has there been not one jot of public feedback published? This is from September 2014, I find it terrifyingly empty of anything but discussing change in communications of the status quo programme.

I was at that workshop, hosted by Mencap on communicating

with vulnerable and excluded groups the article mentions. It was carefully managed, with little open room discussion to share opinions cross groups (as the Senior Policy Adviser at Signature pointed out.) Whilst we got the NHS England compilation of the group feedback afterwards, it was not published. Maybe I should do that and ask how each concern will be addressed? I didn’t want to stand on the NHS England national comms. toes, assuming it would be, but you know, what? If the raw feedback says from all these meetings, these are our concerns and we want these changes, and none are forthcoming, then the public should justifiably question the whole engagement process.

It’s public money, and the public’s data. How both are used and why, is not to be hidden away in some civil service spreadsheet. Publish the business case. Publish the concerns. Publish how they are to be addressed.

From that meeting and the others I have been to, many intelligent questions from the public remain unanswered. The most recent care.data advisory workshop summarised many from the last year, and brought out some minority voices as well.

 

On the day of NHS Citizen, the new flagship of public involvement, people like me who attended the NHS England Open Day on June 17th, or care.data listening events, may be understandably frustrated that there is no publicly available feedback or plan of any next steps.
care.data didn’t make it into the NHS Citizen agenda for discussion for the 18th. [Many equally other worthy subjects did, check them out here if not attending or watch it online.] So from where will we get any answers? Almost all the comment, question and feedback I have heard at events has been constructively critical, and worthy of response. None is forthcoming.

 

Instead, the article above, this reported speech by Mr.Kelsey and its arguments, make me think engagement is going nowhere. No concerns are addressed. PR is repeated. More facts and figures which are a conflation of data use for clinical treatment and all sorts of other uses, are presented as an argument for gathering more data.

Citizens do not need told of the benefits. We need concrete steps taken in policy, process and practice, to demonstrate why we can now trust the new  system.

Only then is it worthwhile to come back to communications.

How valued is patient engagement in reality, if it is ignored?

How will involvement continue to be promoted in NHS Citizen and other platforms, if it is seen to be ineffective?

How might this affect future programmes and our willingness to get involved in clinical research?

I sincerely hope to see the raw feedback published very soon, which NHS England has gathered in their listening events. How that will be incorporated into any programme changes, as well as  communications, will go a long way to assuring the quantity in numbers and quality of cross-population participation.

The current care.data status is in limbo, as we await to see if and when any ‘pathfinder’ CCGs will be announced that will guinea pig the patient records from the GP practices in a trial rollout, in whatever form that may take. The latest official statements from Mr.Kelsey have been on 100-500 practices, but without any indicator of where or when. He suggests ‘shortly’.

What next for care.data? I’ll keep asking the questions and hope we hear some answers from the NHS England Patients and Information Directorate. Otherwise, what was the [&88!@xY!] point of a six month pause and all these efforts and listening?

Publish the business case. Publish the concerns. Publish how they are to be addressed.

What is there to hide?

After this six-month engagement, will there be a happy ending? I feel patients are about to be left jilted at the eleventh hour.
******

You’ll find my more recent posts [last] have more depth and linked document articles if you are looking for more detailed information.

******

March 31st: A mother’s journey – intro

March 31st: Transparency

April 3rd: Communication & Choice

April 4th: Fears & Facts

April 7th: What is care.data? Defined Scope is vital for Trust

April 10th: Raw Highlights from the Health Select Committee

April 12th: care.data Transparency & Truth, Remit & Responsibility

April 15th: No Security Blanket : why consent packages fail our kids

April 18th: care.data : Getting the Ducks in a Row

April 23rd: an Ode to care.data (on Shakespeare’s anniversary)

May 3rd: care.data, riding the curve: Change Management

May 15th: care.data the 4th circle: Empowerment

May 24th: Flagship care.data – commercial uses in theory [1]

June 6th: Reality must take Precedence over Public Relations

June 14th: Flagship care.data – commercial use with brokers [2]

June 20th: The Impact of the Partridge Review on care.data

June 24th: On Trying Again – Project Lessons Learned

July 1st: Communications & Core Concepts [1] Ten Things Learned at the Open House on care.data and part two: Communications and Core Concepts [2] – Open House 17th June Others’ Questions

July 12th: Flagship care.data – commercial use in Practice [3]

July 25th: care.data should be like playing Chopin – review after the HSCIC Data Sharing review ‘Driving Positive Change’ meeting

July 25th: Care.data should be like playing Chopin – but will it be all the right notes, in the wrong order? Looking forwards.

August 9th: care.data and genomics : launching lifeboats [Part One] the press, public reaction and genomics & care.data interaction

August 9th: care.data and genomics : launching lifeboats [Part Two] Where is the Engagement?

September 3rd: care.data – a Six Month Pause, Anniversary round up [Part one] Open questions: What and Who?

September 3rd: care.data – a Six Month Pause, Anniversary round up [Part two] Open questions: How, Why, When?

September 16th: care.data cutouts – Listening to Minority Voices Includes questions from those groups.

September 16th: care.data – “Anticipating Things to Come” means Confidence by Design

October 30th: patient questions on care.data – an open letter

November 19th: questions remain unanswered: what do patients do now?

December 9th: Rebuilding trust in care.data

December 24th: A care.data wish list for 2015

2015 (updated after this post was published, throughout the year)

January 5th 2015: care.data news you may have missed

January 21st 2015: care.data communications – all change or the end of the line?

February 25th 2015: care.data – one of our Business Cases is Missing.

March 14th 2015: The future of care.data in recent discussions

March 26th 2015: Wearables: patients will ‘essentially manage their data as they wish’. What will this mean for diagnostics, treatment and research and why should we care? [#NHSWDP 3]

May 10th 2015: The Economic Value of Data vs the Public Good? [1] care.data, Concerns and the cost of Consent

The Economic Value of Data vs the Public Good? [2] Pay-for-privacy, defining purposes

The Economic Value of Data vs the Public Good? [3] The value of public voice.

May 14th 2015: Public data in private hands – should we know who manages our data?

June 20th 2015: Reputational risk. Is NHS England playing a game of public confidence?

June 25th 2015: Digital revolution by design: building for change and people (1)

July 13th 2015: The nhs.uk digital platform: a personalised gateway to a new NHS?

July 27th 2015: care.data : the economic value of data versus the public interest? (First published in StatsLife)

August 4th 2015: Building Public Trust in care.data sharing [1]: Seven step summary to a new approach

August 5th, 2015: Building Public Trust [2]: a detailed approach to understanding Public Trust in data sharing

August 6th 2015: Building Public Trust in care.data datasharing [3]: three steps to begin to build trust

August 12th 2015: Building Public Trust [4]: “Communicate the Benefits” won’t work for care.data

August 17th 2015: Building Public Trust [5]: Future solutions for health data sharing in care.data

September 12th 2015: care.data: delayed or not delayed? The train wreck that is always on time

****

Questions, ideas, info & other opinions continue to be all welcome. I’ll do my best to provide answers, or point to source sites.

For your reference and to their credit, I’ve found the following three websites useful and kept up to date with news and information:

Dr. Bhatia, GP in Hampshire’s care.data info site

HSCIC’s care.data site

medConfidential – campaign for confidentiality and consent in health and social care – seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent

 

 

 

care.data – “anticipating things to come” means confidence by design

“By creating these coloured paper cut-outs, it seems to me that I am happily anticipating things to come…I know that it will only be much later that people will realise to what extent the work I am doing today is in step with the future.” Henri Matisse (1869-1954) [1]
My thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.”

Part one here>> Minority voices

This is Part two >> the need for confidentiality and anticipating the future.”

[Video in full > here. Well worth a viewing.]

Matisse – The cut outs

Matisse when he could no longer paint, took to cutting shapes from coloured paper and pinning them to the walls of his home. To start with, he found the process deeply unsatisfying. He felt it wasn’t right. Initially, he was often unsure what he would make from a sheet. He pinned cutouts to his walls. But tacking things on as an afterthought, rearranging them superficially was never as successful as getting it right from the start. As he became more proficient, he would cut a form out in one piece, from start to finish. He could visualise the finished piece before he started. His later work is very impressive, much more so in real life than on  screen or poster. His cut outs took on life and movement, fronds would hang in the air, multiple pieces which matched up were grouped into large scale collections of pieces on his walls. They became no longer just 2D shapes but 3D and complete pictures. They would tell a joined-up story, just as our flat 2D pieces of individual data will tell others the story of our colourful 3D lives once they are matched and grouped together in longitudinal patient tracking from cradle to grave.

Data Confidentiality is not a luxury

From the care.data advisory meeting on September 6th, I picked out the minority voices I think we need to address better.

In addition to the minority groups, there are also cases in which privacy, for both children and adults, is more important to an individual than many of us consider in the usual discussion. For those at risk in domestic violence the ability to keep private information confidential is vital. In the cases when this fails the consequences can be terrible. My local news  told this week of just such a woman and child whose privacy were compromised.

“It is understood that the girl’s mother had moved away to escape domestic violence and that her ex-partner had discovered her new address.” (Guardian, Sept 12th)

This story has saddened me greatly.  This could have been one of my children or their classmates.

These are known issues when considering data protection, and for example are addressed in the RCGP Online Roadmap (see Box 9, p20).

“Mitigation against coercion may not have a clear solution. Domestic violence and cyberstalking by the abuser are particularly prevalent issues.”

Systems and processes can design in good privacy, or poor privacy, but the human role is a key part of the process, as human error can be the weakest link in the security chain.

Yet as regards care.data, I’ve yet to hear much mention of preventative steps in place, except an opt out. We don’t know how many people at local commissioning levels will access how much of our data and how often. This may go to show why I still have so many questions how the opt out will work in practice, [5] and why it matters. It’s not a luxury, it can be vital to an individual. How much of a difference in safety, is achieved using identifiable vs pseudonymised data, compared with real individual risk or fear?


“The British Crime Survey (BCS) findings of stalking prevalence (highest estimate: 22% lifetime, 7% in the past year) give a 5.5% lifetime risk of interference with online medical records by a partner, and a 1.75% annual risk.”
This Online Access is for direct care use. There is a greater visible benefit for the individual to access their own data than in care.data, for secondary uses. But I’m starting to wonder, if in fact care.data is just one great big pot of data and the uses will be finalised later?Is this why scope is so hard to pin down?


The slides of who will use care.data included ‘the patient’ at this 6th September meeting. How, and why? I want to have the following  explained to me, because I think it’s fundamental to opt out. This is detailed, I warn you now, but I think really important:

How does the system use the Opt out?

If you imagine different users looking at the same item of data in any one record, let’s say prescribing history, then it’s the security role and how the opt out codes work which will determine who gets to see what.



I assume here, there are not multiple copies of “my medications” in my record.  The whole point of giant databases is real-time, synched data, so “my medications” will not be stored in one place in the Summary Care Record (SCR) and copied again in ‘care.data’ and a third time in my ‘Electronic Prescription Service (EPS). There will be one place in which “my medications” is recorded.


The label under which a user can see that data for me, is their security role, but to me largely irrelevant. Except for opt out.


I have questions: If I opt out of the SCR programme at my GP, but opt in at my pharmacy to the EPS, what have I opted in to? Who has permission to view “my medications”  in my core record now? Have I created in effect an SCR, without realising it?


[I realise these are detailed questions, but ones we need to ask if we are to understand and inform our decision, especially if we have responsibility for the care of others.]


If I want to permit the use of my record for direct care (SCR) but not secondary uses (care.data) how do the two opt outs work together,  and what about my other hospital information?


Do we understand what we have and have not given permission for and to whom?
If there’s only one record, but multiple layers of user access who get to see it,  how will those be built, and where is the overlap?
We should ask these questions on behalf of others, because these under represented groups and minorities cannot if they are not in the room.

Sometimes we all need privacy. What is it worth?

Individuals and minorities in our community may feel strongly about maintaining privacy, for reasons of discrimination, or of being ‘found out’ through a system which can trace them. For reasons of fear. Others can’t always see the reasons for it, but that doesn’t take away from the value it has for the person who wants it or their need for that human right to be respected. How much is it worth?

It seems the more we value keeping data private, the more the cash value it has for others. In 2013, the FT created a nifty calculator and in an interview with Dave Morgan, reckoned our individual data is worth less than $1. General details such as age, gender and location are in the many decimal place range of fractions of a cent. The more interesting your life events, the more you can add to your data’s total value. Take pregnancy as an example.  Or if you add genomic data it  goes up in market value again.

Whilst this data may on a spreadsheet be no more than a dollar amount, in real life it may have immeasurably greater value to us on which you cannot put a price tag. It may be part of our life we do not wish others to see into. We may have personal or medical data, or recorded experiences we simply do not want to share with anyone but our GP. We might want a layered option like this suggestion by medConfidential to allow some uses but not others. [6]

In this debate it is rare that we mention the PDS (Personal Demographic Service), which holds the name and core contact details of every person with and NHS number past and present, almost 80 million. This is what can compromise privacy, when the patient can be looked up by any A&E, everyone with Summary Care Record access on N3 with technical ability to do so. It is a weak link. The security system relies on human validations, effectively in audit ‘does this seem OK to have looked up?’  These things happen and can go unchecked for a long period without being traced.

Systems and processes on this scale need security designed, that scales up to match in size.

Can data be included but not cut out privacy?

Will the richness of GP record / care.data datasharing afford these individuals the level of privacy they want? If properly anonymised, it would go some way to permitting groups to feel they could stay opted in, and the data quality and completeness would be better. But the way it is now, they may feel the risks created by removing their privacy are too great. The care.data breadth and data quality will suffer as a consequence.

The requirement of care.data to share identifiable information we may not want to, and that it is an assumed right of others to do so, with an assumed exploitation for the benefit of UK plc, especially if an opt-out system proceeds, feels to many, an invasion of the individual’s privacy and right to confidentiality. It can have real personal consequences for the individual.

The right to be open, honest and trusting without fear of repercussion matters. It matters to a traveller or to someone fleeing domestic violence with fears of being traced. It matters to someone of transgender, and others who want to live without stigma. It matters to our young people.

The BMA recognised this with their vote for an opt-in system earlier this year. 

Quality & Confidence by Design

My favourite exhibition piece at Tate Britain is still Barbara Hepworth’s [3] Pelagos from 1946. It is artistically well reviewed but even if you know little of art, it is simply a beautiful thing to see. (You’re not allowed to touch, even though it really should be, and it makes you want to.) Carved from a single piece of wood, designed with movement, shape, colour and shadow. It contains a section of strings, a symbol of interconnectivity. (Barbara Hepworth: Pelagos[4]). Seen as a precious and valuable collection, the Hepworth room has its own guard and solid walls. As much as I would have liked to take pictures, photography was not permitted and natural light was too low. Visitors must respect that.

So too, I see the system design needs of good tech. Set in and produced in a changing landscape. Designed with the view in mind of how it will look completed, and fully designed before the build began, but with flexibility built in. Planned interconnectivity. Precise and professional. Accurate. And the ability to see the whole from the start. Once finished, it is kept securely, with physical as well as system-designed security features.

All these are attributes which care.data failed to present from its conception but appear to be in progress of development through the Health and Social Care Information Centre. Plans are in progress [6] following the Partridge Review, and were released on September 3rd, with forward looking dates. For example, a first wave of audits is scheduled for completion 1/09 for four organisations. HSCIC will ‘pursue a technical solution to allow data access, w/out need to release data out to external orgs. Due 30/11.’ These steps are playing catch up, with what should have been good governance practices and procedures in the past. It need not be this way for GP care.data if we know that design is right, from the start.

As I raised on Saturday, at the Sept 6th workshop advisory committee, and others will no doubt have done before me, this designing from the start matters.  Design for change of scope, and incorporating that into the communications process for the future is vital for the pathfinders. One thing will be certain for pathfinder practices, there will be future changes.

This wave of care.data is only one step along a broad and long data sharing path

To be the best of its kind, care.data must create confidence by design, build-in the solutions to all these questions which have been and continue to be asked. We should be able to see today the plans for what care.data is intended to be when finished, and design the best practices into the structure from the start. Scope is still a large part of that open question. Scope content, future plans, and how the future project will manage its change processes.

As with Matisse, we must ask the designers, planners and comms/intelligence and PR teams, please think ahead  ”anticipating things to come”. Then we can be confident that we’ve  something fit for the time we’re in, and all of our kids’ futures. Whether they’ll be travellers, trans, have disabilities, be in care or not.  For our majority and all our minorities. We need to build a system that serves all of the society we want to see. Not only the ‘easy-to-reach’ parts.

”Anticipating things to come” can mean anticipating problems early, so that costly mistakes can be avoided.

Anticipating the future

One must keep looking to design not for the ‘now’ but for tomorrow. Management of future change, scope and communication is vital to get right.

This is as much a change process as a technical implementation project. In fact, it is perhaps more about the transformation, as it is called at NHS England, than the technology.The NHS landscape is changing – who will deliver our healthcare. And the how is changing too, as telecare and ever more apps are rolled out. Nothing is constant, but change. How do we ensure everyone involved in top-down IT projects understands how the system supports, but does not drive change? Change is about process and people. The system is a tool to enable people. The system is not the goal.

We need to work today to be ahead of the next step for the future. We must ensure that processes and technology, the way we do things and the tools that enable what we do, are designing the very best practices into the whole, from the very beginning. From the ground up. Taking into account fair processing of Data Protection Law, EU law – the upcoming changes in EU data protection law –  and best practice. Don’t rush to bend a future law in current design or take a short cut in security for the sake of speed. Those best practices need not cut out the good ethics of consent and confidentiality. They can co-exist with world class research and data management. They just need included by design, not tacked on, and superficially rearranged afterwards.

So here’s my set of challenge scenarios for NHS England to answer.

1. The integration of health and social care marches on at a pace, and the systems and its users are to follow suit. How is NHS England ensuring the building of a system and processes  which are ‘anticipating by design’ these new models of data management for this type of care delivery, not staying stuck on the model of top-down mass surveillance database, planned for the last decade?

2. How will NHS England audit that a system check does not replace qualified staff decisions, with algorithms and flags for example, on a social care record? Risk averse, I fear that the system will encourage staff to be less likely to make a decision that goes against the system recommendation, ‘for child removal’, for example. Even though their judgement based on human experience, may suggest a different outcome. What are the system-built-in assumed outcomes – if you view the new social care promotional videos at least it’s pretty consistent. The most depressing stereo typed scenarios I’ve seen anywhere I think. How will this increase in data and sharing, work?

“What makes more data by volume, equal more intelligence by default?”

Just like GP call centre OOH today, sends too many people calling the 111 service to A&E now, I wonder if a highly systemised social care system risks sending too many children from A&E into social care? Children who should not be there but who meet the criteria set by insensitive algorithms or the converse risk that don’t, and get missed by over reliance on a system, missing what an experienced professional can spot.

3. How will the users of the system use their system data, and how has it been tested and likely outcomes measured against current data? i.e. will more or fewer children taken into care be seen as a measure of success? How will any system sharing be audited in governance and with what oversight in future?

Children’s social care is not a system that is doing well as it is today, by many accounts, you only need glance at the news most days, but integration will change how is it delivers service for the needs of our young people. It is an example we can apply in many other cases.

What plan is in place to manage these changes of process and system use? Where is public transparency?

care.data has to build in consent, security and transparency from the start, because it’s a long journey ahead, as data is to be added incrementally over time. As our NHS and social care organisational models are changing, how are we ensuring confidentiality and quality built-in-by-design to our new health and social care data sharing processes?

What is set up now, must be set up fit for the future.

Tacking things on afterwards, means lowering your chance of success.

Matisse knew, “”Anticipating things to come” can mean being positively in step with the future by the time it was needed. By anticipating problems early, costly mistakes can be avoided.”

*****

Immediate information and support for women experiencing domestic violence: National Domestic Violence, Freephone Helpline 0808 2000 247

*****

[1] Interested in a glimpse into the Matisse exhibition which has now closed? Check out this film.

[2] Previous post: My six month pause round up [part one] http://jenpersson.com/care-data-pause-six-months-on/

[3] Privacy and Prejudice: http://www.raeng.org.uk/publications/reports/privacy-and-prejudice-views This study was conducted by The Royal Academy of Engineering (the Academy) and Laura Grant Associates and was made possible by a partnership with the YTouring Theatre Company, support from Central YMCA, and funding from the Wellcome Trust and three of the Research Councils (Engineering and Physical and Sciences Research Council; Economic and Social Research Council and Medical Research Council).

[4]  Barbara Hepworth – Pelagos – in Prospect Magazine

[5] Questions remain open on how opt out works with identifiable vs pseudonymous data sharing requirement and what the objection really offers. [ref: Article by Tim Kelsey in Prospect Magazine 2009 “Long Live the Database State.”]
[6] HSCIC current actions published with Board minutes
[8] NIB https://app.box.com/s/aq33ejw29tp34i99moam/1/2236557895/19347602687/1
*****

More information about the Advisory Group is here: http://www.england.nhs.uk/ourwork/tsd/ad-grp/

More about the care.data programme here at HSCIC – there is an NHS England site too, but I think the HSCIC is cleaner and more useful: http://www.hscic.gov.uk/article/3525/Caredata

 

care.data – the cut-outs: questions from minority voices

“By creating these coloured paper cut-outs, it seems to me that I am happily anticipating things to come…I know that it will only be much later that people will realise to what extent the work I am doing today is in step with the future.” Henri Matisse (1869-1954) [1]

My thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.”

[Video in full > here. Well worth a viewing.]

After taking part in the care.data advisory group public workshop 10.30-1pm on Saturday Sept 6th in London, I took advantage of a recent, generous gift; membership of the Tate. I went to ‘Matisse – the cut outs’ art exhibition.  Whilst looking around it was hard to switch off the questions from the morning, and it struck me that we still have so many voices not heard in the discussion of benefits, risk and background to the care.data programme. So many ‘cut out’ of any decision making.

Most impressive of the morning, had been the depth and granularity of questions which were asked.  I have heard varying aspects of questions at public events, and the subject can differ a little based on the variety of organisations involved. However, increasingly, there are not new questions, rather I hear deeper versions of the questions which have already been asked, over the last eighteen months. Questions which have been asked intensely in the last 6 months pause, since February 2014 [2] and which remain unanswered. Those from the care.data advisory committee and hosting the event, said the same thing based on a previous care.data advisory event also.

What stood out, were a number of minority group voices.

A representative for the group Friends, Families and Travellers (FFT) raised a number of excellent questions, including that of communications and ‘home’ GP practices for the Traveller community. How will they be informed about care.data and know where their ‘home’ practice is and how to contact them? Whose responsibility will that be?

I spoke with a small group a few weeks ago simply about NHS use in general. One said they feared being tracked down through a government system [which was used for anything other than clinical care]. They register with new names if they need to access A&E. That tells you already how much they trust ‘the system’. For the most part, he said, they would avoid NHS care unless they were really desperately in need and beyond the capability of their own traveller community ‘nurse’. The exception was childbirth when this group said they would encourage expectant mums to go into hospital for delivery. They must continue to do so when they need to and must feel safe to do so. Whether in general they may use primary care or not, many travellers are registered at GPs, and unless their names have been inadvertently cleansed recently, they should be contacted before any data extraction as much as anyone else.

Our NHS is constitutionally there for all. That includes groups who may be cut off from mainstream inclusion in society, through their actions, inaction or others’ prejudice. Is the reality in this national programm actively inclusive? Does it demonstrate an exemplary model in practice of what we hear said the NHS aims to promote?

Transgender and other issues

The question was posed on twitter to the event, whether trans issues would be addressed by care.data. The person suggested, that the data to be extracted would “out us as probably being trans people.” As a result,  she said “I’d want to see all trans ppl excluded from care.data.”

Someone who addressed ‘her complex gender identity’ through her art, was another artist I respect, Fiore de Henriquez. She was ‘shy of publicity.’ One of her former studios is filled with work based on two faces or symbiotic heads, aside from practice pieces for her more famous commissioned work.For her biography she insisted that nothing be concealed. “Put in everything you can find out about me, darling. I am proud to be hermaphrodite, I think I am very lucky, actually.” However, in her lifetime she acknowledged the need for a private retreat and was shy until old age, despite her flamboyant appearance and behaviour. You can see why the tweet suggested excluding any transgender data or people.

‘Transgender issues’ is an upcoming topic to be addressed at the NHS Citizen even on 18th September as well. How are we making sure these groups and the ‘other’ conditions, are not forgotten by care.data and other initiatives? Minorities included by design will be better catered for, and likely to participate if they are not simply tacked on as an afterthought, in tick-box participation

However, another aspect of risk is to be considered – missing minorities 

Any groups who opt themselves out completely, may find that they and their issues are under represented in decision making about them by commissioners and budget planning for example.  If authorities or researchers choose to base decisions only on care.data these discrepancies will need taken into account.

Ciarán Devane highlighted this two-sided coin of discrimination for some people. There are conditions which are excluded from care.data scope. For example HIV. It is included in HARS reporting, but not in care.data. Will the conditions which are excluded from data, be discriminated against somehow? Why are they included in one place, not in another, or where data is duplicated in different collections, where is it necessary, where is the benefit? How can you make sure the system is safe and transparent for minorities’ data to be included,  and not find their trust undermined by taking part in a system, in which they may have fears about being identified?

Missing voices

These are just two examples of groups from whom there had been little involvement or at least public questions asked, until now. The traveller and transgender community. But there are many, notably BME, and many many others not represented at any public meetings I have been at. If they have been well represented elsewhere, any raw feedback, with issues addressed, is yet to be shared publicly.

Missing voices – youth

A further voice from which we hear little at meetings, because these meetings have been attended as far as I have seen so far, mainly by older people, is the voice of our youth.

They are left out of the care.data discussion in my opinion, but should be directly involved. It is after all, for them that we need to think most how consent should work, as once in, our data is never deleted.

Whilst consent is in law overridden by the Health and Social Care Act, it is still the age old and accepted ethical best practice. If care.data is to be used in research in future, it must design best practices now, fit for their future purposes.

How will our under-18s future lives be affected by choices others make now on their behalf?

Both for them as the future society and as individuals. Decisions which will affect research, public health planning and delivering the NHS service provision as well as decisions which will affect the risk of individual discrimination or harm, or simply that others have knowledge about their health and lifestyle which they did not choose to share themselves.

Some people assume that due to social networks, young people don’t care about privacy. This is just not true. In fact, studies show that younger people are more conscious of the potential harm to their reputation, than we may want to give them credit for.

This Royal Academy of Engineering report, [3]” Privacy and Prejudice – Young People’s views on the Development of Electronic Patient Records” produced in conjunction with Wellcome from 2010, examines in some depth, youth opinions of 14-18 year olds.  It tackles questions on medical data use: consent, control and commercialism. The hairy questions are asked about teen access to records, so when does Gillick become applied in practice and who decides?

The summary is a collection of their central questions and its discussion towards the end, which are just as valid for care.data today, as well as for considering in the Patient Online discussion for direct care access. I hope you’ll take time to read it, it’s worth it.

And what about the Children?

Some of our most vulnerable, will have their data and records held at the HSCIC. There are plans for expansion rapidly into social care data management, aligned with the transformation of health and social services. Where’s the discussion of this? Does HSCIC even have the legal capacity to handle children’s social care data?

How will at-risk groups be safer using this system in which their identities are less protected? How will the information gathered be used intelligently in practice to make a difference and bring benefit? What safeguards are in place?

“Future releases of new functionality are planned over the next 12 months, including the introduction of the Child Protection – Information Sharing application which will help to improve the protection of children who have previously been identified as vulnerable by social services.” (ref: HSCIC Spine transition)

“Domestic violence can affect anyone, but women,
transgender people and people from BME groups are at higher risk than the general population.”
(Ref: Islington’s JSNA Executive Summary – 9 – August 2014)

 

We must ask these questions about data sharing and its protection on behalf of others, because these under represented groups and minorities cannot themselves, if they are not in the room.

Where’s the Benefit?

We should also be asking the question raised at the event, about the benefits compared with the data already shared today. “Where’s the benefit?”, asked another blogger some time ago, raising his concerns for those with disabilities. We should be asking this about new dating sharing vs the many existing research databases and registries we already have, with years of history. Ciarán Devane wisely asked this on the 6th, succinctly asking what attendees had expressed.

“It will be interesting to know if they can demonstrate benefits. Not just: ‘Can we technically do this?’ but: ‘If we see primary care data next to HES data, can we see something we didn’t see before’?”

An attendee at the Healthwatch run care.data event in Oxford last week, asked the same thing. NHS England and IT providers would, one would think, be falling over themselves to demonstrate the cost/benefit, to show why this care.data programme is well managed compared with past failures. There is form on having expensive top down programmes go awry at huge public expense and time and effort. On NpfIT “the NAO also noted that “…it was not demonstrated that the financial value of the benefits exceeds the cost of the Programme.”

Where is the benefits case for care.data, to weigh against the risks? I have yet to see a publicly available business case.

The public donation

Like my museum membership, the donation of our data will be a gift. It deserves to be treated with the respect that each individual should deserve if you were to meet them face-to-face in the park.

As I enjoyed early evening sun  leaving the exhibition, the grassy area outside was packed with people. There were families, friends, children, and adults on their own. A woman rested heavily pregnant, her bump against her partner. Children chased wasps and stamped on empty cans. One man came and sold me a copy of the Big Issue, I glimpsed a hearing aid tucked into a young woman’s beehive hair, one amputee, a child with Down Syndrome giggling with a sister. Those glimpses of people gave me images I could label without a second glance. Disabled. Deaf. Downs. There were potentially conditions I could not see in others. Cancer. Crohn’s. Chlamydia. Some were drinking wine, some smoking. A small group possibly high. I know nothing about any of those individuals. I knew no names, no addresses. Yet I could see some familial relationships. Some connections were obvious. It struck me, that they represented part of a care.data population, whom buyers and researchers  may perceive as only data. I hope that we remember them as people. People from whom this programme wants to extract knowledge of their lifestyles and lives, and who have rights to express if, and how they want to share that knowledge. How will that process work?

Pathfinders – the rollout challenges that remain?

At the advisory group led meeting it was confirmed that pathfinders, would be chosen shortly.

[CCGs were subsequently announced here,  see related links, end of page for detail, note added Oct 7th]

But  the care.data programme is “still delivering without a business case”.  Despite this, “between two and four clinical commissioning groups will be selected, “in the coming weeks” to begin the pathfinder stage of the care.data programme, ” reports NIB meeting[8]

It reports what was discussed at the meeting.

“The pathfinders will test different communication strategies before moving forward with the data extraction part of the project.”

I for one would be extremely  disappointed if pathfinders go ahead in the ‘as is’ mode.  It’s not communications which is the underlying issue still. It’s not communications that most people ask about. It’s questions of substance, to which, there appear to be still insufficient information to give sound answers.

Answers would acknowledge the trust in confidentiality owed to the individual men, women, and children whose data this is. The people represented by those in the park. Or by the fifty who gave up their time on a sunny Saturday to come and ask their questions. Many without pay or travel expenses just giving up their time. Bringing their questions in search of some answers.

The pathfinder communications cannot be meaningfully trialled to meet the needs of today and the future design, when the substance of key parts of the message is uncertain. Like scope.

The care.data advisory group and the Health and Social Care Information Centre , based on the open discussion at the workshop both appear to be working, “anticipating things to come…” and to be doing their best to put processes and change in place today, which will be “in step with the future.”

To what extent that is given the right tools, time and support to be successful with all of the public, including our minorities, I don’t know. It will depend largely now on the answers to all the open questions, which need to come from the Patients and Information Directorate at the Commissioning Board, NHS England.

After all, as Mr.Kelsey himself says,

“The NHS should be engaging, empowering and hearing patients and their carers throughout the whole system all the time. The goal is not for patients to be the passive recipients of increased engagement, but rather to achieve a pervasive culture that welcomes authentic patient participation.”

What could be less empowering than to dismiss patient rights?

The challenge is: how will the Directorate at NHS England ensure to meet all these technical, governance and security needs, and yet put the most important factors first in the design; confidentiality and the voice of the empowered patient: the voice of Consent?

*****

This post captured my thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.” This was about the people side of things. Part two, focuses on the system part of that.

*****

Immediate information and support for women experiencing domestic violence: National Domestic Violence, Freephone Helpline 0808 2000 247

*****

[1] Interested in a glimpse into the Matisse exhibition which has now closed? Check out this film.

[2] Previous post: My six month pause round up [part one] http://jenpersson.com/care-data-pause-six-months-on/

[3] Privacy and Prejudice: http://www.raeng.org.uk/publications/reports/privacy-and-prejudice-views This study was conducted by The Royal Academy of Engineering (the Academy) and Laura Grant Associates and was made possible by a partnership with the YTouring Theatre Company, support from Central YMCA, and funding from the Wellcome Trust and three of the Research Councils (Engineering and Physical and Sciences Research Council; Economic and Social Research Council and Medical Research Council).

[4]  Barbara Hepworth – Pelagos – in Prospect Magazine

[5] Questions remain open on how opt out works with identifiable vs pseudonymous data sharing requirement and what the objection really offers. [ref: Article by Tim Kelsey in Prospect Magazine 2009 “Long Live the Database State.”]
[6] HSCIC current actions published with Board minutes
[8] NIB https://app.box.com/s/aq33ejw29tp34i99moam/1/2236557895/19347602687/1

 

*****

More information about the Advisory Group is here: http://www.england.nhs.uk/ourwork/tsd/ad-grp/

More about the care.data programme here at HSCIC – there is an NHS England site too, but I think the HSCIC is cleaner and more useful: http://www.hscic.gov.uk/article/3525/Caredata

 

O my Luve’s like a red, red rose #indyref

“O my Luve’s like a red, red rose, that’s newly sprung in June:       O my Luve’s like the melodie, That’s sweetly play’d in tune.

As fair art thou, my bonnie lass, so deep in luve am I;                 And I will luve thee still, my dear, Till a’ the seas gang dry. […]”

Robert Burns, 1759-1796 [aged 37]

You can listen to the full poem sung by Suzy Bogguss

Friends and I hold a Burns Supper every year. What began as a one off, was repeated in a different home, with the same dozen guests a year later. So a tradition was born to celebrate the life and works of  Scotland’s most famous export.

“His national pride, fierce egalitarianism, and quick wit have become synonymous with the Scottish character itself.”      Robert Burns Birthplace Museum, Dumfries

Burns was famous for his belief in equality, and his poem “Is There for Honest Poverty“, commonly known as “A Man’s a Man for A’ That” of 1795 declared a stance in society, seen today as the rise of a liberalism, which is declared the world over today still. It is often used by the Freemasons as Burns was at the time of his death. It is the fierce pride in humanity of man that infuses Burns’ work and which has transcended time. His love poetry, and rural recordings, being ‘ahead of his time’ made him memorable. But I feel it was his awareness and discussion of identity and social-economic politics which still inspires and what makes his work contemporary.

The Burns Night Declaration

Perhaps it is some of that inspiration that Westminster hoped to capture by naming the latest political deal, granting Scotland more rights which Mr. Brown pledged this week, “The Burns Night Declaration.”

Scots have been promised “modern home rule within the United Kingdom” on a breakneck timetable on Monday if they rejected independence next week.”

From a personal perspective

I think there is a real chance of a yes vote. If Scotland were to vote for independence next week, I will celebrate the freedom, with a divided allegiance. The Scottish ‘heart’ in me will stir with a rallying cry and remember my ancestors who died on the fields of Bannockburn. My English ‘head’ will be disappointed, as I worry for the country downsizing to the size of Denmark will be a shock, and not fully thought out change, without a leader who can bring the whole country together.  I foresee a future in which the Celts are ruled still rather than greater independence for Scotland, with more dominant powers from Brussels instead of London as they seek strength and support as they once did with France in the Auld Alliance, rallying against English oppression. Should there be a yes vote, I will be dispirited, whilst clinging to optimism of change.

I have concerns about the economy, research investment, about its potential effect on the NHS and education provision, arguably better for the people than in England today. But in the end, my concerns don’t count, it is for the Scots in Scotland to decide.

As a Scot living in England, I have no vote. For my part, that is quite alright. For another Scot I know who fully intends moving back ‘up North’ and going ‘home’ in some years time, she is devastated at the thought of Scotland going solo, and that she has no say. Her sister still in Scotland, who can vote, was among those who received a letter in which she felt that it hinted that her employer, the Job Centre, may be put in jeopardy from a yes vote. [She may be right if DWP would need to be significantly ‘disentangled’ according to this report.] She’s considering voting yes anyway. Why?

Because at local level she thinks their jobs are in jeopardy of potential outsourcing regardless of the vote.

Because she’s lived through years of ‘better together’ and has seen only a decline in standards of living and no one has seemed to really seek to change that. She may not realise, Scotland is not alone in this, but with little elected power in Westminster, they may see independence as their only hope of change.

Because she feels democratically disempowered. No matter who she votes for today, it still results in not getting who they want in charge of government, and no way to oust them if a few areas of England vote that person in. The overall budget control for Scottish spending comes from Westminster. And lastly, in terms of governance, whilst necessary, adding experience and a system of ‘check and balance’ on legislation, the unelected House of Lords sits only in London and can appear accountable to no one, never mind the Scots.

How may politics be affected by the outcome?

I hear many people have had enough of imposed rule as they see it and disconnected leaders. One may think through devolution, more powers for Holyrood would have satisfied the desire for autonomy, but in fact people are fed up with the rhetoric  of the political rule from both Westminster and Edinburgh.

Many dislike the leadership choices on offer [latest FullFact poll stats here Sept 11th]. Women in particular appear to consider this important in their decision. Should the yes vote win, it will not necessarily be a win for Mr. Salmond, but a win for independence.

Key is, what will that independence really look like? It will be interesting to see. Would it be what Mr. Salmond expects? What scenarios have been thought out [1], debated, and what may have been missed?

The red rose of Labour has become faded in Scotland.  This has and  will continue to have an impact on future General Elections. I believe however, it must be encouraged to continue to grow, come back and actively thrive in Scotland regardless of this vote outcome. All mainstream parties would do well consider this, above party politics. There is a risk that the disenchantment with mainstream politics will give rise to more extreme factions. A sense of identity is a good thing, but at its extreme can be twisted into a damaging minority view of nationalism which is based on one group view over another, the real-world diversity of a nation excluded. Should mainstream parties leave a vacuum in the garden of Scottish politics, others will be quick to fill it, and it is often ugly weeds which take root fastest.

How has the People’s involvement in politics been affected?

Perhaps the best thing about this campaign has been an awakening. An awakening of people’s role in the democratic process, exemplified by the planned march on voting day in one area of Glasgow.  Where low turnout is typical organisers aim to stir people and carry them with them, to the polls, [which may or may not be legal electoral practice]. There has been an unprecedented number of electoral registrations.  But also an awakening of the big parties that your action and inaction matters. It has been forgotten in recent apathy. This awakening will not be restricted to Scotland, and politicians across Europe should learn from these experiences quickly, as calls for independence in other places are bound to come.

The Scots are inspirational to many.  Whilst fiction, the spirited speech of William Wallace in Braveheart calls to the basic instinct in us all, for freedom. We Scots have a strong sense of history as part of our identity. Entwined in that is the relationship between the wealthy landed Scots and the English nobility, and the complex succession of the throne and in-fighting of Scots lairds.  Who sided with whom, when and how trust was won and lost became glorified legend in Rob Roy and Braveheart, but it’s not all based on fiction, but historical fact.

What has been perhaps unfairly represented by some media headlines and survey statistics, is the image of how “the English” feel about “the Scots” and how the two countries would be after a yes vote. One survey showed well over 66% in favour of the Union, but the survey chose to represent a subjective statement on currency as its headline, for example. Poll upon poll state conflicting measures as ‘fact’. It is hard to separate fact from feeling in an emotive debate.

A Troubled Relationship

If you are not Scottish, you may or may not be familiar with the Scot’s spirit of the everyday, not celebrities nor stereotypes. If you have time, listen to this speech, a Burns night reply from the lassies. It gives the ladies a chance to ‘get their neb in’. (4.28) It’s meant to be tongue in cheek and irreverent, and not to take the subject too seriously, and this hits the spot. But mainly because it hints at something of what matters to Scots  in a speech about Burns.  In particular it’s worth considering this one snippet. With humour she tells us what matters above politics and above class, is relationships and communication. It is the relationship and communication that has broken down between Westminster and the people in Scotland which may be the Union’s  downfall. The Scottish People feeling neglected, had stopped talking to Westminster a long time ago, and Westminster didn’t notice.

Robert Burns understood People

Burns was a poet, a man of love and passion. A man of the heart. A man popular with women, a philanderer, yet perhaps one of the first feminists? Not a warrior, not a career politician, he was a man for the people. He recognised women’s rights above and amongst politics, and spoke up on our behalf:

“While Europe’s eye is fix’d on mighty things,
The fate of empires and the fall of kings;
While quacks of State must each produce his plan,
And even children lisp the Rights of Man;
Amid this mighty fuss just let me mention,
The Rights of Woman merit some attention.”

Visiting politicians would do well to appeal to the rights of women as Burns did. I believe that it is not a romantic notion of freedom, which will lead to a majority of the yes vote. It is another practical aspect of life exemplified in Burns’s poetry which matters to people today, and how we live. It can affect all, but disproportionally affects women, it is poverty:

Visiting Scotland I have seen an increase in poverty and hardship in recent years, and experienced the Scots’ spirit which has refused to give in and tries to resiliently ride above it. Scotland has found life economically tough in the last twenty years. Bit by bit, it has seen its shipbuilding, steel making and coal mining weaned away with few jobs to replace those hard industries. Farming and fishing on small scale has become harder to compete worldwide. Scots believe in society and living well together. They’ve seen the right to a pursuit of happiness undermined at every turn, in the ideology focused on the economic wealth development of the individual. Westminster may have woken up too late to the effects that has had over years of neglect and apparent blinkered ignorance “down South”.
Politicians could learn from Burns

These last minute efforts of visiting politicians may or may not be planned in the campaign.  But as Burns said,

“The best laid schemes o’ mice an’ men gang aft agley.”

The politicians may visit all they like, for a day or a week, better late than never. It will not make or break the majority of voters, voting with their head based on practical matters, but it may influence the ‘don’t noes’ the ‘vote for freedom’ who vote only with the heart at the last minute, and influence enough to swing the outcome. The majority of people will decide based not on last ditch efforts and promises, but on how they want to live, and what kind of society they want to see. Will speeches and promises made in a week, override experiences of many years? Or will they swing an influential minority?

The question is how convinced will voters be of the need for a complete break from the United Kingdom and true independence with its associated risk, versus the offering in the Burns Night Declaration? How much will heart rule the head or vice versa?

Whichever way the vote may go, how will mainstream political parties react and cultivate the long term relationship between Scotland and England? There will be a period between the vote and enactment. How will uncertainty be handled in that interim? How will the yes and no factions keep talking to one another, and grow as one nation, whether in a united, devolved or separate states?

O my Luve’s like a red, red rose

Scotland whichever path you choose to take, I will follow your decision closely.  Whatever happens next week, some will be broken hearted. I hope I won’t be among them. And I hope that for those who are disappointed with the outcome, we will all be kind, encouraging and not seek to blame, as we go about restoring our trust, our relationships and grow together in a positive, new direction. Society cannot afford a political vacuum which will provide space for the weeds of extremism to grow between us.

Wherever we are born, it is not unexpected to continue to have positive feelings for that country, as our birthplace. I may have left over thirty years ago, but my heart is still in the Highlands. I still love Scotland and hope she still loves us enough to stay together.

But I’ll understand if not.

“But to see her was to love her,
Love but her, and love forever.
Had we never lou’d sae kindly,
Had we never lou’d sae blindly,
Never met – or never parted –
We had ne’er been broken hearted”

Robert Burns, 1759-1796

***

[1] Governing after the Referendum – by the Institute for Government  http://www.instituteforgovernment.org.uk/sites/default/files/publications/Scenarios%20paper%20-%20final%20APJR.pdf 

 

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

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

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

What can happen in six months?

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

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

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

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

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

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

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

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

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

Are the listening exercises a complete waste of time?

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

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

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

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

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

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

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

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

scrcdoverview

 

Conclusion on Scope & its Communications:

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

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

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

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

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

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

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

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

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

reply

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

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

Where and to whom may our data be transferred?

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

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

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

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

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

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

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

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

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

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

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

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

Opt out is not as simple as it sounds.

OPT OUT

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

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

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

25th February in Parliament:

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

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

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

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

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

Our data continues to be released regardless.

What I want to understand on opt out:

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

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

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

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

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

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

7. How will objection be effectively communicated and measured?

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

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

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

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

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

**********

ACCESS

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

“Access by police, sold to insurance companies, sold for commercial purposes” Newsnight, February 19th 2014
… all shown to be users of existing medical records held by the HSCIC through the Partridge Review.
police

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

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

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

dwp_wollaston

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

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

DWP_strategy

 

HSCAct

 

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

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

What about other government departments access to health data?

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

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

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

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

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

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

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

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

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

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

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

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

****

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

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

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

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

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

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

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

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

**********

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

Key refs:

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

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

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

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

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

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

[7] Developments in Access to DWP data 2014

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

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

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

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

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

Care.data – my six month pause, anniversary round up [Part 2]

In part one, I looked at the status of what data care.data extracts – examining scope, the role of management of scope creep in trust, opt out management, and the who, of accessing our data and for what purposes.

Here in part two, I want to give a six-month status update of my opinion of where the public is on understanding the HOW of Governance & Oversight, Legislation, changes to the scope governance to include Research, examine work-in-progress and look to explaining the WHY of care.data, the Communications of the programme as a whole.  Leading to ask, WHEN will any of this happen?

To go back to part one of this post > click here.

Care.data – a six month pause, anniversary round up – Part 2

What legislative changes may influence care.data sharing?

In July, at an ADT meeting Dr.Geraint Lewis was billed in the agenda to be speaking on care.data. [8] At the same meeting, the item on European Data directive, where the Wellcome Trust presenter [5] noted that the new EU legislation would require informed consent for identifiable data sharing, and limit pseudonymous data sharing without consent deserves a special mention, and question all of its own.

Mr.Kelsey pointed out in January, at the ISCG meeting that his colleague was over in Brussels to discuss the new EU law. So they are clearly well aware there are implications.

Now a theoretical question. If you were designing a process upon which new legislation were going to have a big effect, would you a) try and design your process accordingly to take the new law and best practice into account to be ‘ahead of the game’ or b) rush to get the project finished before the change of law affected it, and hope it is not retroactive?

Q. Is this coming change in EU Data Protection one reason for the big rush to get care.data extracted?

In terms of UK legislation, what has changed since the pause? The Care Bill became the Care Act in May.

Senior figures in the Lords, in public health as well as MedConfidential raised concerns and proposed amendments.

Considerations included defining:

1. Purposes to exclude commercial exploitation

2. Oversight & Governance

3. Opt out on statutory basis

In the preceding Care Bill debate, Jamie Reed outlined the amendment to wording and how the public may interpret its effect. I agree with what he said:

“the new clause provides for entirely elastic definitions that, in practice, will have a limitless application.”

clause
Unless there are plans to sub-define the clause and to legislate to support that,  I await to see how that ‘purposes ‘ definition can do anything to help support our trust that actuaries & insurance firms, health or pharmaceutical marketing researchers or other third parties we cannot imagine, will be legally entitled to request to buy data. The HSCIC can only measure requests against the law under which it is given to operate after all.

a) the promotion of health – interpret that how you will.

“The DARS process has three stages – Application, Approval, and Access.”

I fear this kind of sets the tone for the expectation of applicants, you ask you get – and there’s no mention of rejection in there. But then, I’m probably being too cynical. A list of the number and type of rejected applications by organisation, would improve my trust here. CAG publishes it, where is the same transparency for DAAG? How many applicants are rejected vs accepted each month?

How will DARS interpret “the promotion of health?” I’d like for them to give case scenarios of the problematic past releases, and judge now, whether they would be accepted again or not.

Mr. Kelsey identified that this definition of purposes was vital to the public in February, but I don’t think it has been clearly addressed since.

first

 

I look forward to hearing more about what clear and specific guidance there will be to the Data Access Group,  and what protections there will be for corrective action on data mismanagement, the so called ‘one strike and out’, which must encourage breach transparency, not drive reporting underground.

The second big ticket  item the Care Act is to have brought in, is a change to oversight.

Changes to Oversight and Governance?

Again, I am yet to see any documented organisational mapping of how Data Access will be reviewed and regulated going forward, taking this new legislative amendment into account. There was some mention of CAG and IIGOP at the HSCIC stakeholders’ meeting, but nothing documented to view how recommendations may become enacted. Progress is somewhat unclear, but awaiting monitoring in the pause.

Mr. Kelsey has said the the IIGOP has been asked to advise, but I understand it has no statutory footing, nothing to make its recommendations effective, should the Patients & Information Directorate at NHS England disagree. [We do well to remember past form here. The Caldicott 2 recommendations on data sharing, which stated they ‘the Review Panel does not support such a proposition’ [7.2] that there should be dated shared for commissioning in an assumed ‘consent deal’ without clear legal basis and patient communication. It goes so far as to say it is not aligned to the rights and commitments in the NHS Constitution. This was chaired by Dame Caldicott, who also chairs IIGOP.]

When the Patients & Information Directorate /NHS England and the BMA vote also disagree, and NHS England seems to have ignored the BMA ARM call for opt in at least I have seen no public facing statement which even acknowledged it had happened at all – which strikes me as being just plain rude to your most significant stakeholder – it gives me little hope that the Patients & Information Directorate at NHS England is going to take another group’s perspective into account. I hope I am proved wrong.

But there is no outside oversight or governance which can impose action, or intervene with any legal weight in disputed decision making like this.

GPs as Data Controllers are between a rock and a hard place still. Legally bound to release data by the Health and Social Care Act 2012 if the Patient & Information Directorate at NHS England directs them to do so, professionally bound to maintain confidentiality.second

In February at the HS Committee, Dr. Nagpaul said they were,

“looking forward to the next six months enabling our patients to be properly informed so …they can make an informed choice.

Since the Care Act and scope have changed since then, the opt out mechanism is unclear, and nothing has come from national level to acknowledge their call for opt out, I for one am not surprised patients have still not been informed in these six months. It would be hard to pin down what we could have been informed of precisely.

gps_controller

The Secretary of State wrote on April 25th, asking to ensure current practices are up to the task, but as polite as it is, a letter is no form of governance.  It rather feels like a distant wave at a drowning swimmer, acknowledging an issue, but staying well clear from actually having to go into the water.

Currently it is IAG which reviews the requests for changes to the scope of the GPES extraction tool. It has direct governance and independence. Where it fits ongoing between CAG and DAAG is unclear to me.

And what about research?

This is possibly the latest *new* development, that the care.data advisory minutes hints at. That research purposes will now be put forward to the IAG in a formal request for the GP part of care.data to be accessible for research. (Because yes, despite all the campaigning and everyone and their kittens saying how good care.data would be ‘for research’ it’s still, to date, only approved for commissioning purposes. NOT for research.) HES, SUS other  data which HSCIC already has is used in research already. Whilst some primary care data may used in research today where practices have otped in to other research databases, such as CPRD, I believe that is only in an anonymous format. Now, how this works today with linkage via HSCIC and how much we know about it, may be unclear to the public. But it’s not the same as GP primary data in identifiable format being extracted and stored and linked with every other part of your health and social care records and more, for research and sale, as is the care.data intent.

I would like to see this instead considered, a layered approach to opt in.  This enables some personal level of data governance as well as consent. Saying yes to public research, but no to commercial marketing research or re-use. Personally, I’d also want to split out genomics from other research. This supports patient choice, so oft touted as core to the new NHS. The current set up is diametrically opposed to everything NHS England purports to stand for. How can patients trust a system, which says one thing, and acts entirely against it?

Well, if the proposers can define ‘research’, I’m happy to consider signing up to opt in for its use. If it’s a blank cheque to use the knowledge of my children for just anything, unlimited in scope and time – forget it. And why? Because I am concerned that the pseudonymous use of data and use of pseudonymous tissue are too loosely governed. Who is auditing today the ethical combining of genomic mapping and pseudonymous data use? Who is using it, and for what? Where is it information that may be sold, and to whom? I don’t want their future choices limited by something I didn’t pay attention to on their behalf, today.

Why does the NHS England Patient and Information Directorate want to extract care.data? Have we lost sight of the most valuable purposes of data, and how to use it well, through the commercial drive for UK plc – purposes put ahead of research? Commissioning purposes and commercial mining are taking precedence over care and confidentiality.

Stephen Dorrell MP,  in Parliament on March 11th (Col. 198) focused rightly on defining the purposes of care.data.  In fact the IAG has not approved research for care.data (GP extracted) to be used in research:

Mr Dorrell: First, we must concentrate the rationale for the programme on to patients. Looking back at how NHS England has got itself into this position over the past few weeks and months, I have lost count of the number of times I have been told how important the programme is for research. I absolutely agree that it is important for research, but the health and care system does not exist to support research; it exists to treat and care for patients. The logic of allowing commissioners to develop joined-up services that respond to individual people’s needs—and the pattern of need based on multi-morbidity to which the right hon. Member for Sutton and Cheam (Paul Burstow) has referred—must be placed centre stage in the justification for the improved handling of data in the health and care system.

I go back to the point that this must be about treating people, not conditions. We cannot achieve that if we do not have the information to allow us to connect up the experience of the patient between one part of the system and another. In regard to the logic behind NHS England’s plans, yes there is a research argument, but—with apologies to the research scientists—it is a secondary argument. The primary argument is that we must improve the services delivered to patients and service users.

Which is why it was odd at the time, to see the Wellcome Trust driven ‘Peter’ campaign supported by the 40 research charities, championing the need to have our data. It was data (in HES/SUS) they already had access to.  At the same time care.data [wave one, primary care GP extraction] was collapsing under the weight of the press and public shock that our hospital records had been shared with third parties for years without consent.

What has practically been done by the bodies involved in data sharing?

From an NHS England point of view, I’ve seen little. HSCIC on the other hand has seemed proactive and productive. [10]

The most significant undertaking was the Partridge Review, which analysed in depth 10% of the data sharing agreements of the last eight years.

The HSCIC has undertaken to continue complete logging of registered approved data releases on a  quarterly basis.

There is also an audit function in development. “These audits will check that our customers are adhering to the obligations documented in the Data Sharing Contract and Data Sharing Agreements.”  Whether or not that will mean that HSCIC auditors will go onsite at data recipients in FDA manufacturing audit-style, is probably another matter.

The access mechanism is under review, and at the open HSCIC meeting in July Kingsley Manning stated that a secure access lab will be part of their offering next year. How that will affect who has what access to what data, remains unknown. But it appears there may be work-in-progress:

On 1st September, Ciaran Devane posted on twitter that, “With care.data advisory group chair hat on, well done to hscic team who listened very well at session on proposed secure data facility.”

Today in contrast, there are currently two ways in which data can be accessed:

  1. Data are released to you using a Secure File Transfer Mechanism.
  2. You may access Hospital Episode Statistics (HES) data using the HES Data Interrogation System.

The HSCIC Data Access Policy has been updated on their website and now states it is supported by the following principles which includes:

  1. share information to support the provision of health and social care and the promotion of health; not for solely commercial purposes;

{my italics} Solely, does not exclude enough in my opinion. This is where the care.data will meet resistance still, if it cannot see the wisdom of giving up its use for commercial purposes.

Their stakeholder meeting “Driving Positive Change” hosted at The King’s Fund was minuted here.

My own opinions on attending the meeting, are in these past blogs posts. Part one and Part two.

HSCIC also updated their Freedom of Information Disclosure Log which had been out of date by well over 6 months.

Lots going on at HSCIC.

What else has happened in between then and now? What were the expectations of the pause?

npickles6months

 

The HSCIC did have a Code of Confidentiality consultation, which was most recently published.

The Department of Health issued their Annual Assessment of the NHS Commissioning Board (Brand name NHS England), which made a passing reference to care.data on page 10.

There was a rather obtuse and confusing ASH consultation on data sharing which stressed it ‘wasn’t care.data’ yet included many of the same items, and were for purposes which included commissioning and risk stratification, ostensibly purposes of care.data. The whole thing was rather a mess. Aside from the data sharing aspects, it included whether the organisations would be State or commercially owned, and changes to consent and data sharing for people with learning disabilities.  It was really, far too wide ranging, and had a very short consultation period. Personally, I feel concerned other less defined organisations may now be made legally entitled to access our primary care records, ostensibly not under ‘care.data’ but for similar yet even more obtuse purposes.

[addition Sept 2nd after publishing – medConfidential has released an in-depth set of documents regarding secure data access design and the ASH on their blog > here]

Communications

Communications was and is repeated over and over, as the key flaw in the roll out. The doordrop junk mail was widely cited as a misjudged marketing campaign. I hope, through the above, to dispel that myth. Communications is the ‘how’ you tell people – in care.data it’s the ‘what, why, who and when’ which is missing as well. The Communications process cannot clearly inform if the substance of the message is in flux or unclear.

Have there been any national direct communications to citizens and patients from the Patients & Information Directorate at NHS England? Some online letters? Yes, from Mr. Kelsey here and here. “This is the first in a series of updates on care.data. I hope you will help shape it by giving your views on the care.data programme,” said his letter. None since then. The care.data advisory group notes are somewhat internal minutes for the public, but give us some idea of direction.

Local activities? Perhaps. There have been a couple of events posted online, such as was held via Healthwatch in Essex, but nothing in my own area. Some more accessible versions of the communications leaflet were released.

Have there been events open to the public to hear about care.data? Yes, but not widely promoted to individuals. The second hosted by the care.data advisory committee is coming up in London on September 6th: “This event is for health bodies and organisations representing a wider constituency perspective and will take place on Saturday 6 September in London from 10am to 2pm.”

The NHS England website states that,  at the beginning of August, we have taken part in over 150 local and regional events.” I know that I actively look out for any mention of events online, and I’ve been aware of about half a dozen, none of which has been in my county although it is included in the published list. I’ve asked at my local CCG, and neither they nor the NHS England Area Team are aware of any having been in West Sussex either. So, if these 150 events are taking place, it is not widely publicly communicated.

I attended the June 17th NHSE Open Day which included one hour on care.data.  I’ve not yet seen any follow up of the questions which were asked by others then, and I blogged about then, here. The feedback from that Open Day has yet to be published > here. The site states that all the care.data listening event feedback will be published ”later in the summer.” School’s back, summer’s over. Time for some of that feedback to be shared? I hope it’s soon, so that there is time for proper digestion, consultation and adaption before the pilot rollouts.

I’ve been to one public event which was primarily intended for charity group representatives,  and the HSCIC stakeholder event, which was not about care.data, but the review after the Partridge audit. All three of these events were advertised online as open to the public. I’ve asked my CCG about it at two meetings, and had no follow up and nothing from my GP practice at all.

The NHS England Board in July didn’t mention care.data at all.

If I’m actively looking to find out what is happening, and that’s all I find, what does the general public know?

I proposed two topics for NHS Citizen consideration: care.data [as did someone else as well] and genomics. Neither made the cut for public discussion. Where can these issues which will shape the NHS so fundamentally and touch every patient and citizen, get into mainstream discussion?

So far, because any gathered listening on care.data has been kept to the Patients & Information Directorate and not made public, we don’t know what has been actioned. But from my event attendance and online discussions, I think feedback is fairly consistent.  Summed up by what Mr.Kelsey asked the Open Day by a show of hands, how many feel confident they even know what care.data is? The answer was clearly, not enough.

The July care.data advisory group minutes state that a communications consultancy was about to be hired to review materials.

What will be interesting to see is how the communications materials are relaunched with new information. Simply repackaging what was there before won’t do. If there have been significant changes in content and process, as has been suggested are the successful results of the Partridge Review and Care Act, then they must be reflected in communications content. Just as the real concerns and questions received in the listening events over the last 6 months must also be addressed.

No one seems keen to tell us. The same questions have been batted about, for a year and a half now. From April 2013, the minutes are really worth reading again. The sharing for commercial cash flow was omitted in potential uses, but did flag concerns sharing ONS data with commercial intermediaries. The Partridge Review April 2014 since showed part of the extent to which the data mining of our health records was happening in the background. The desire to get access across to all health and social care data hints in 2013 at the unbound scope they still struggle to define today. Fast forward a year, and the project was put on pause.

Six months later, when will we find out what concrete improvements have been made in this pause? What are plans for the WHAT of Scope and its future change management, the WHO of Data Access and Sharing, the HOW of Governance & Oversight, Opt out management, Legislation, and the WHY Communication of the programme as a whole? And WHEN will any of this happen?

“This purpose is broad, and poorly defined. It needs to be better specified through the core values of the NHS to ensure that care.data makes the contribution that it is capable of to the future of the NHS.”

James Wilson, Discover Society, June 2014

Has the commercial exploitation of HES poisoned the care.data pool of data uses for everyone else who wants access to our NHS world leading data?

Have we lost sight of the most valuable purposes of data, and how to use it well, through the commercial drive for UK plc – purposes put ahead of research? Commissioning purposes and commercial mining are taking precedence over care and confidentiality.

Is the Patients & Information Directorate NHS England still going for gold in a world class model, is it sneaking up the back straight for a sprint finish, or is pulling out from the race?

**********

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

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

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

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

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

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

[7] Developments in Access to DWP data 2014

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

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

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

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

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