“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) 
My thoughts on the care.data advisory event Saturday September 6th. “Minority voices, the need for confidentiality and anticipating the future.”
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  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?
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, ” 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)
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.
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
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
 Interested in a glimpse into the Matisse exhibition which has now closed? Check out this film.
 Previous post: My six month pause round up [part one] https://jenpersson.com/care-data-pause-six-months-on/
 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).
 Barbara Hepworth – Pelagos – in Prospect Magazine