patient data

White, middle-class and well-connected – and that’s just the patients: is this the health research culture we wish to see in the UK?

Ever since it was established in 2011, the Health Research Authority (HRA) – the UK regulator of health research whose mission is ‘to protect and promote the public interest’ – has commissioned a regular survey of the general public’s attitudes towards health research.

Today sees publication of the latest of these surveys, this time jointly with the National Institute for Health Research (NIHR). The survey was conducted in April 2017 by Ipsos MORI summer and consisted of face-to-face interviews with 1014 adults aged 15 and over. The survey findings are the most recent insight into UK public attitudes to be published.

Some clear positives emerge from report which you can find here. Also on the NIHR website here.

Consistent with other surveys (including the last HRA one in 2014)  showing strong public support for health research, 83% of respondents said that health research is very important. 91% of respondents said they would be confident that they would be treated with dignity and respect if asked to take part in a research study, compared to 89% in 2014 and 82% in 2013.

Given the UK’s patchy history of engaging the public in a debate about the issue of personal data. Not to mention the  national data opt-out programme being rolled-out in May. We can take some encouragement from today’s findings which suggest increasing public confidence about how their data is treated. 80% of respondents said they would be confident that their personal data would be held securely if they were asked by their doctor to take part in a health research study in the UK. 26% of respondents said they would not be. In 2014 the respective figures were 72% and 18%.

On some issues, however, opinions seem rooted to the floor. People still have least confidence in health research studies undertaken by the pharmaceutical industry.  But on the other hand, the knowledge that people’s confidence in pharma research grows once they know it works closely with the NHS, may be a foundation for promoting further partnership working which shows a different side to the industry. I am sure this will be an important topic of conversation at the AMRC/ABPI Patients First ‘Pioneering Partnerships’ conference on 20th March.

But perhaps the starkest findings for me are those that shine a light on the differences in attitudes to research across different groups related to ethnicity, social class and working status.

If you are white your expectations of being treated treated with dignity in health research are greater than if you are from an ethnic minority (52% versus 35%). The same is true if you are better off (59% of those in social class AB versus 39% of those in social class DE). And the findings point to a similar picture when it comes to educational level. It is also worth adding that only 26% of respondents from an ethnic minority were very confident about the use of their data compared to 37% of white respondents.

These differences matter. Last year a slate of policy reports was published that highlighted the need for health research to collectively change its ways if it was going to produce knowledge and outcomes that reflect the needs of an increasingly diverse population. This includes breaking down the barriers that make people from these groups less likely to want to be part of research.

But nor are these differences new to us. The ‘Going the Extra Mile’ strategic review of public involvement in the NIHR highlighted diversity as a key issue issue which has resulted in a dedicated work-stream being taken forward by INVOLVE . Look out also for publication of the final PPI standards by the four UK nations on 20th March. However, in other countries the debate about under-representation of certain groups has raged more strongly.  This article is quite a good example of how that public discussion is unfolding in the United States.

But given the highly collaborative health research system we have developed in the UK perhaps we have an opportunity to use this strength to collectively take prolonged and considered action where others might find it more difficult to take a strategic approach. But it will require leadership from the very top as well as action at grassroots level, working with community leaders, voluntary sector groups and others who can build bridges in meaningful ways.

 

James Joyce once said that opinion polls were like children digging up flowers to see if they were growing or not. But sometimes such polls are important in highlighting issues and pinpointing instances where some re-planting is necessary. In this instance, my sense is that we need to be growing research in the communities and places where under-represented groups in research live and work. Not be expecting them to come to us.

Have a good day.

(tomorrow I’ll be having a quick look at some of the other findings in the survey and what they mean for health research and public involvement).

If you have read my last two blogs – and if you have, thank you – then you will know I have been sharing some of my family’s experiences of health and social care over the last six months.

Now that my father is home following his stroke we have entered a whole new chapter in all our lives. Visits to hospital have been replaced by visitations aplenty by carers, district nurses, physiotherapists and more. That the faces and names change more regularly than contestants in the Big Brother house is unnerving and undermining of continuity of care. The regularity with which appointments are cancelled or changed just seems symptomatic of a system that is dysfunctional to say the least. Frequently people turn up long after they should have done.

Last week my Dad was supposed to attend a hospital appointment. I phoned up several weeks before to book ambulance transport for him. He had to be ready by 12 to be picked up for his 2pm appointment, I was told. I was duly given a reference number. What a great system, I thought.

Well, on the day, my mum and dad were ready for him to be taken well before 12. It takes a bit longer to get yourself ready if you’ve had a stroke! It’s not a question of just putting your coat on. 12 o’clock cake and went. Time passes. My mum phoned. Reference number at hand. It’s on it’s way, she was told.

At 1.45 they decided to give up on it. It never did turn up. It may well still be trotting around Kent somewhere. After all, we’ve had a lot of mist and fog lately. We will see if it turns up on Monday.

(They didn’t!)

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Now, I can’t promise that the NHS and social services will make you better. But I can tell you that they are very good these days at ASSESSMENTS. There are all sorts of assessments I believe apart from the life-saving one you get on arrival at A&E. There are ASSESSMENTS of need, ASSESSMENTS of eligibility, ASSESSMENTS of ASSESSMENTS, face-saving ASSESSMENTS, we don’t know what to do ASSESSMENTS, and panic ASSESSMENTS.

Yes, if you are a patient – and family carer for that matter – you can expect to be ASSESSED within an inch of your life.

As you would expect, while care visits are subject to perpetual change, appointments involving an assessment have an uncanny knack of going ahead without fail and bang on time. Whatever happens to all these assessments heaven knows. The information is rarely shared with you. I remember my Dad was quite upset by something written in his discharge notes. I am sure the person wrote it meant no harm. But it had a big impact on his outlook for a few days. I would have been the same. If only someone could have gone through the notes with us first or, better still, completed them WITH us.

My sense is that the endless assessments and reviews are a sure sign of a deeply insecure service. A system staffed by people who are so pressured that they have understandably become uncertain about their own rights of decision-making. Take this paraphrased conversation with a district nurse:

Mum: I ordered some medical supplies with your colleague.
District nurse: Have they not come yet?

Mum: No, I’ve called the surgery twice and left a message on your ansaphone but no one has called me back.

District nurse: How do you know they are the right thing.

Mum: Because that’s what we’ve been using and they work.

District nurse: Ok, well I’ll check when I get back. But if I can’t find a record and I’ll have to come back and do an ASSESSMENT.

Most times my mum just buys the things herself. Anyway, I’m thinking of launching a new care service this coming week called ‘ Prevaricare.’ At its heart is continuous assessment so that should please the quality gurus. Constant prevarication. No actual care is delivered as a result. Patients hate it. And it wastes an awful lot of time by which point the ‘client’ (hate that word with a passion) has given up in every sense of the word!

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For those looking for more serious news from this blog, I apologise. But here you go. A thought, leading to a hot topic and a helpful link.  I have lost count of the number of times in the last month where everything would have worked a whole lot better if information and data was being shared within and between organisations more effectively. The District Nurse example is a small one. It might at least cut down on the number of assessments.
The importance of information and data sharing to the provision of direct care was highlighted in an excellent new report published by the Richmond Group of charities last Monday. 

It is certainly sobering to think of data sharing in these terms where the impact can be immediate and life-saving. Rather than in the context of research or service change where the benefits might not be felt for many years.

You may have also seen this week NHS England’s announcement regarding a national data lake.  I being a shallow person can’t quite get past that hideous ‘lake’ term even if the proposals have merit. Who thinks up these names?

Anyway, you heard it here first, Prevaricare is coming to you next week. Unless we change the appointment.

I am in Helsinki, Finland, for a few days this week, sitting on a review panel for the ‘Joint Programme – Neurodegenerative Disease Research.’  It is the first time that this programme has involved patients in its review process for funding research so it feels a bit of a milestone moment.  This, after twelve months, of patients and the public coming together (lead ably by Mogens Horder in Denmark) to help develop an approach to public involvement that is practical, constructive and manageable for all concerned.  Another small step for public involvement you might say.

Helsinki Sparring PartnersThe meeting is taking place in the Helsinki Congress Paasitorni which, roughly translated, is the City’s Workers’ Hall. It is a rather magnificent building and last night I posted some of the art that adorns its walls, to my Instagram account.  Outside, in the square, is a sculpture of two sparring fighters as see here.  They certainly don’t seem that hostile towards one another do they?

Somehow it feels like a fitting metaphor for how patients and researchers should be working together in a review panel: sparring together to get better, challenging each other’s thinking, endeavouring to develop each other’s technique .  This is no bout between hostile combatants.  Or it shouldn’t be.

Yet, as well all know, what happens in the ring is dependent on many factors. From the quality of the referee (Chair) to how the ring is set up.  I am happy to report that this has been a good experience thus far.

Before I go….A good friend got in touch with me last week. ‘Have your ears been burning?’ they asked.  Before going on to tell me how my name had cropped up in conversation with a mutual acquaintance.

The saying – ”Have your ears been burning?’ – goes back to Roman times I understand.  It was believed that if your left ear burns, someone is speaking ill of you and; if your right ear burns someone is praising you.

But I am thinking we ought to update this bit of ancient lore to suit modern times.  Something along the lines of: if your right ear burns then someone is accessing your personal data for societal benefit; if your left ear burns someone is using it unwisely.  And if your nose itches then someone else is looking at your genome sequence.

Why? Because of late I have found myself reviewing a lot research proposals in which, almost without exception, researchers are proposing the collection of this or that sample, to generate data that might be linked or not linked with other data, to give new insights or not into this or that disease.  None of this is wrong or unethical of course.  Appropriate consent has been sought from the patient in every case.  Much of the proposed research could be highly significant in the search for disease causes and viable treatments.

In fact it is perhaps one of the less talked about practical benefits of research using personal data that: if people were being poked, prodded and questioned in person as much as their data can be, we might be facing research fatigue across the general population.  But it would still be good to know when, how and why in my opinion. Rather than relying on a feeling.

Still, you can take sayings too far. After all, the Romans also believed anybody could be a doctor.  And I don’t want to start a fight.

If the day has a ‘y’ in it then I guarantee that policy-makers and experts somewhere across Whitehall and Westminster are meeting to plot a way through the stalemate otherwise known as the ‘use of health data.’  That is: how we are going to use my and everyone else’s medical records to make people better now and in the future?

This afternoon, sitting in my third meeting on the subject in as many days (yes, I know, I lead an exciting life don’t I?), I did wonder – and not for the first time – if I was about to disappear down a very deep hole; there are so many organisations, working groups, initiatives, Boards, committees, panels, all working on the issue. I might just make one up for the hell of it.

Talking of which, if we had placed moles at High Barnet, Morden, Lewisham and Upminster and asked them to create the London tube, the resulting mess wouldn’t be far off where we are now.  A maze of tunnels that mean something to the owner but no one else.  A complex system that you would only know was there because of the small mounds of earth on otherwise pristine lawns.  Everyone is trying to do something and with the best of intentions.  But the overall purpose of this activity remains frustratingly nebulous.  We can’t even agree how to express why we want to do it.

Maybe the task ahead on data is essentially an engineering feat akin to Crossrail.  We need to know the starting point, the end point and then have a bloody large tunnelling machine to hand.  We might cause a few edifices to lean.  Some egos might vanish down the odd sink hole or two.  A few people will miss out completely on a connection to the finished product.  But if we want to get from A to B, that’s the price we will have to pay.  Some will no doubt say that the National Information Board meeting last week is the start of this.  I hope so.

There are rumours Government is ruminating on a new health challenge for its next five years in office.  Like dementia in the last parliament.  I’ve heard obesity, diabetes and mental health all being mentioned as possibilities.  Which probably means it’s all just a pointless rumour.  But, if not……I hope that the Prime Minister picks none of these.  I’d rather he went for something like ‘health data’ which would benefit all of us.  It probably needs that sort of ‘oomph’ and clarity of purpose.  Critically, it probably needs this sort of leadership to help us get to the other side.

And what of the public?  Well, you’ll note they are conspicuously absent from my opening line.  Need I say more. In the meantime we have all become amateur experts on the subject of public confidence and trust.

It might be heresy to say it but I suspect we know as much as we need to about public attitudes.  We certainly don’t need any more surveys or polls or focus groups.  We also knows what works in public engagement.  Not just in general but on the specific issue of data use as well.  We just need to get out there and talk it through with people in terms they can connect with.  The same with our GPs and other health professionals. Because it will take time to build a compact on this issue.  And it will be too late if we don’t start soon.

So, there you go, a blog with no real ‘A’ nor ‘B’.  But this is just a blog.  Not about helping people to get better.

The Nuffield Council on Bioethics have today published their report: ‘The collection, linking and use of data in biomedical research and health care: ethical issues’ following months of inquiry by an expert working group Chaired by Professor Martin Richards.  Here’s a copy of the actual report.

There is much coverage in the media already including the Financial Times, The Guardian, Science 2.0, and The Independent.  Given the report makes a number of interesting and sometimes pointed observations on a number of data intitiatives including care.data, the 100k Genome Initiative and Biobank I am sure it will continue to generate a great deal more comment.

The overriding message of the report is pretty clear: public participation in the governance of initiative using data for medical research and health care is essential to building and maintaining public trust.  One of the panel members, Susan Wallace is widely quoted as saying: “Any data project should first take steps to find out how people expect their data to be used and engage with those expectations through a process of continued participation and review.”

The report has an interesting section on participant-led research (Page 146 onwards).  But the key bit of the report is Chapter 5 which looks at ‘Ethical Governance.’  It puts forward four principles for guiding future governance on the use of data including: respect for persons, human rights; participation and accounting for decisions.  It summarises the principle of participation as:

Principle 3 – Participation
The set of expectations about how data will be used (or re-used) in a data initiative, and the appropriate measures and procedures for ensuring that those
expectations are met, should be determined with the participation of people with morally relevant interests. This participation should involve giving and receiving public accounts of the reasons for establishing, conducting and participating in the initiative in a form that is accepted as reasonable by all. Where it is not feasible to engage all those with relevant interests – which will often be the case in practice – the full range of relevant values and interests should nevertheless be fairly represented.

The report has laid down an important and powerful principle here which – alongside the other three – should be a benchmark forr how all data access and sharing is governed and managed.

Some people are not going to like this report, that’s for sure. But, in my view, it’s spot on about public involvement being essential to building public trust.

I note that it is London Fashion Week.  I look forward to finding out what colours are ‘in’ or ‘out,’ what I should or should not be wearing over the next 12 months.

Science is no stranger to fashions or trends.  All of a sudden you can find yourself deluged with reports and the such like about a particular topic.  It’s not always clear why.  Or what might have prompted it.  But there you go.

I suspect we will be talking a lot about stratified medicine this autumn.  Last Thursday the Association of British Pharmaceutical Industries (ABPI) held a roundtable to launch a progress report on its 2009 ‘white paper’ on stratified medicine.  The report is entitled ‘The stratification of disease for personalised medicine.’  It notes the solid progress made in the  UK over the last five years but says we are possibly off the pace if we want to be a world leader. My colleague Louise Leong has written a helpful blog here summarising the report which you can find here.

ABPI is also hosting a follow-up conference on stratified medicine on 20th November with Alastair Kent from the Genetic Alliance UK taking up the patient mantle.

The ABPI notes in passing some of the issues around patient and public information and understanding that need to be addressed. But no more than this.

So, if you want a real insight into the issues for patients and the public, Irecommend you read the new report out today on Innovate UK‘s (formerly known as the Technology Strategy Board (TSB)) website.  It’s called ‘Stratified medicine: a public dialogue.’   And it summarises the public dialogue exercise conducted by OPM earlier this year.

I confess to being a little surprised that I stumbled upon the report today because I was on the Oversight Group and hadn’t received any advance notice that it was coming out.  Maybe I just missed it totally although I don’t think I did.  It seems a little discourteous to myself and other ‘Oversight’ members to say the least.

Regardless of this, it is a shame that such a report is not getting more of a push by those who commissioned it.  This is important stuff.  And some of its messages are important matters of debate even if they might not be that palatable to those who would prefer a smooth scientific consensus to rule the day.

In particular, the OPM dialogue exercise identified challenges in four key areas as follows:

Definition and communication: challenges

— Having a clear, consistent definition of stratified medicine

— Presenting a realistic picture of stratified medicine, its pros and cons

— Continuing to engage the public and patients

Implications for patients and care: challenges

— Support patients to make sound treatment decisions

— Support patients for whom there is no current treatment

— Provide the right facilities and training to healthcare professionals

Social issues and consequences: challenges

— Understand and mitigate any implications for equality

— Define the role of the private sector in developing stratified medicine

— Develop understanding of the costs/benefits of stratified medicine

Research, testing and data sharing: challenges

— Give research participants a choice about how and who uses their data

— Reconcile the role and perception of the medical research industry

— Engage the public in regulation on data sharing

That last section will be of interest to those people who have followed the debate around sharing of personal data.* What it says is that the public want to be part of research that reflects their needs and interests. But trust is not at the levels it should be to make them feel confident and comfortable when it comes sharing data.  Especially when they see this data being shared with the private sector.  That’s the task ahead of us all – to build this level of trust.

I rather liked the comment in the report from a participant in the dialogue exercise: that the story of stratified medicine needs to be told from the point of view of the person in the clinic and their health professional.  Not from the point of view of a Minister or the organisations it might benefit.

Perhaps the rubicon yet to be crossed is that the proponents of stratified medicine continue to parade its wears on the catwalk and have yet to appreciate that, for the rest of us, it’s a question of what it will look like ‘off-the-rack.’

The fundamental issue at stake here is respect for the citizen.

The last month of debate about care.data feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper?

Many will say that NHS England – who yesterday announced a six-month pause in the scheme – have taken the biggest hit. But no one emerges with great credit from this affair. For citizens are non the wiser one way or the other. They have been ill-served by policy-makers on both sides of the debate, as they have been on this issue for as long as I can remember.

I should say that I support care.data.

I think that it will be a secure system but that there are always risks. And no guarantees. I buy into the notion that it is important to future medical research. But I think the claims around this are often exaggerated and don’t do their proponents any favours. I think a form of ‘opt-out’ is the most practical option and in keeping with the values that most of us hope underpin the NHS. Yet I also think that we should have the right to change our minds if and when our life circumstances change.

I think the professions have played fast and loose on the issue for too long. After all, a lot of their power within the system is locked into the current status of yours and my medical records and data.
When we developed the ‘Your health records saves lives’ leaflet many moons ago, citizens were more willing to share their data than GPs who tended to take up a highly paternalistic stance. However, more than a few were less and less paternalistic about their patients when it came to the prospect of working with pharmaceutical companies and being rewarded for it.

Anyway, that’s an aside or should I say unwarranted broadside. But I am afraid that care.data and the years of debate about data preceding has often been a case of policy-makers being, at best, neurotic and, at worst, mistrustful of their fellow citizens.

Fact is that I have been able to form an opinion because I have had an opportunity to listen to, and interrogate, the arguments at close quarters. And that is what was so wrong about the care.data leaflet campaign. In tone and style and delivery it was dismissive of the citizen and their right to question and form an opinion. Would it have been different if NHS Citizen had been in place I ask? Could it not be the perfect issue on which to test and perfect this initiative? Or is that too much to expect?

As an example of how ‘national’ and ‘local’ can work together in the new NHS to roll-out national initiatives, care.data has been a disaster. Whatever happens over the next six months, the initiative must be co-produced with citizens at source, and its delivery collaborative effort by NHS England working with Healthwatch, patient groups, GP Participation Groups and many other partners. If care.data means that much to our nation in terms of health and wealth, we should spend the time and money in investing in our citizens to understand why.

And, lastly, if researchers and doctors and managers want a lifetime of yours and my data to work on then they need to do more to develop a relationship with citizens about its importance and how we can be better custodians of it. A few weeks ago a head of an NIHR Biomedical Research Centre was telling me how their NHS Trust is now including short statements in letters to patients to help grow understanding about how data is used. It is a small example of the level of visibility we need for this important aspect of delivering care in the future.

Fact is, if we want a 21st Century NHS, we need a 21st Century attitude to involving citizens in decision-making.