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Notes from a ‘small island’ in health research…..otherwise known as INVOLVE

A small island has appeared off the coast of Pakistan following the tragic earthquake there last week.  The consensus of scientific opinion is that, before long, this island will disappear without trace.  In the meantime it is an interesting curiosity, attracting quite a gaggle of geologists and geographers.

I wonder if that is how INVOLVE was viewed by the science establishment all those years ago when it first came together? Soon to disappear, I mean.

Well, we didn’t. In fact we are now in our seventeenth year. And we are not so small any more. So there!

Last week INVOLVE held its annual members’ symposium, an opportunity to re-group, share and think about the future.  It is always telling what bubbles to the surface on these occasions.  I even sketched a cartoon to help me think about the themes afterwards.

IMG_0079 (2)

‘Integration’ was one of the most commons words used in our discussions over the two days.  No, not the integration of health and social care.* But, the urgency with which patient and public involvement across health research needs to be integrated or connected at the very least; the dangers in terms of waste, duplication and missed opportunities, if they are not.  Public involvement in research consists of many islands dotted across the system.  Some are well-connected.  Others less so.  We must build bridges quickly between those that are not; even if means settling for pontoons rather than suspension bridges.

Changes in the NHS loom large.  We were treated to two excellent presentations about ‘health and wealth’ and also the Academic Health Science Networks (AHSNs).  AHSNs are the new kids on the block with the given task of helping to generate.  But they are ending up with a different job description and less money than was originally hyped up two years.  So be it.  We’ve been there and done it many times as patients and the public.  However, their emphasis on partnership and collaboration plays into our hands nicely if we can just get through that door marked ‘academia – do not disturb.’ And persuade those monsters from the deep to break the waters with some funding.

We are hesitant about the idea of patient leaders and/or patient leadership.  Or rather, we are concerned about the speed with which patient-driven notions of leadership are fast becoming bastardised and commoditised by the NHS in its anxious search for accountability and legitimacy.  Capsizing looks inevitable but not complete submersion if we can get a boson’s line to it fast enough. Should we succeed I think it could sail from port again but stronger just like INVOLVE did all those years ago.

As always there is he frustration that others in the NHS can not see what we can beyond the fog behind our island.  Who knows what the charities are doing hanging on by the anchor chain and abandoning all hope of independent thought.  Roll on the breath of fresh air that walks in the guise of future NHS leaders who truly understand involvement.  They will come I feel sure.

Yes, we talked about language and definitions (c’mon, if we didn’t it would be like Christmas Island without its red crabs).  We agreed that precision in our language can give confidence to others.  That we shall seek to do, while avoiding those pincers of course!

We also talked at length about standards.  What does good quality public involvement look like?  Should we have a Chief Inspector of Patient and Public Involvement who can be CHiPPi with those who fall short? No. of course not.  But we think there might be mileage in us producing some principles and a framework that helps people identify quality in different contexts.  We can not instruct. We can, however, help others make sense of where they stand and surely that is far more empowering, Anyway, watch this space for an excellent paper summarising what we have discovered in terms of standards and values and principles.

I rather enjoyed the truncated session in which we were asked to identify the things we wished we had known before getting involved in public involvement. I said I wish I had known how much support and help was already out there ready to come to one’s aid.  More simply, that a passion shared is change in the making.

So, give INVOLVE a call today.  Look at the website. Or follow it on Twitter @NIHRINVOLVE

No PPI person is an island in our book.

*By the way does anyone else view health and social care integration as I do – like the merger of Lloyds and TSB. Resulting in a poorer service to consumers over many years before being split into two once again?

The truth, the whole truth and nothing but….pharma

Here is a gripping report from this week’s ‘Adweek’ (based in New York) about the new marketing strategies being used by pharmaceutical companies.

Don’t be put off by the reference to ‘Obamacare.’ The story is equally applicable to the United Kingdom.  For it is essentially a tale about how disease is being re-packaged. Patient data is the new currency, social and digital media the marketplace.  Companies are no longer selling potions and pills but offering an all-round ‘service’ to patients and health professionals.

The speed with which the private sector can move in this way is dizzying (I thought I was doing well this morning by getting someone to agree some terms of reference!).  The sums of money at their disposal, mind-boggling.  In fact, the implications of what is happening can feel overwhelming.  So much so that it is easy, all too easy, to put on one’s ‘Blockbuster’ voiceover just to up the threatening atmosphere.  Yet who isn’t chilled to the bone when a commentator can glibly say in print:

‘For years Lilly has owned diabetes.’

Has anyone told people with diabetes and their families this?

I am sure that many patient advocates will be worried by the scale and speed by which these new approaches are heading our way.  But we seem to be in a collective state of un-readiness for this latest chapter in the marketization of health or selling sickness.  Or are we just complicit?  Either way it makes the work of organisations such as ‘Selling Sickness’ or Sense about Science as well as advocates such as Margaret McCartney  who are calling attention to these trends, all the more important.

How will patients be able to source independent advice when the market is smothered by ‘Trojan horse websites’ or apps backed by pharmaceutical companies? How will they be able to identify truths amidst this morass? Can regulators realistically be expected ‘protect and promote’ the public interest in the digital age using the same carrot and stick approaches that have failed in the past?  We have barely begun to think through the consequences.  Let alone the solutions.  And yes, these have to involve the companies themselves.

The danger is that we continue with our obsessions about things like the best model for lay reviewing when such bigger changes are afoot; we can only stay entrenched in land wars about whether something is public involvement versus participation versus engagement for so long surely?  Let’s not allow ourselves to become so tamed within our own boundaries that we lose the art of thinking beyond them and tackling new challenges?  Otherwise it will all be over when we finally do wake up.

In the meantime, we should remember, there’s no such thing as a free app….

Survey: Cancer patients and research – the signage is there but not the opportunity to take part

You know how the story goes.  Cancer is way ahead of other conditions when it comes to patients having the opportunity to participate in clinical research.  But there’s still lots of room for improvement.

Today NHS England has announced the results of the annual National Cancer Patient Experience Survey.  Almost 70,000 patients took part in the 2013 survey.  And for the second year running it includes the results of people’s responses to questions about access to, and participation in research.  It is therefore becoming an important tracker of how this aspect of the patient experience in the NHS is changing.

This year’s survey includes a new question about whether people have seen information about research in their hospital.  It really is good news that 85% said they had and only 15% had not (I am not going to deal much with regional or local variations today but I invite someone to compare individual Trust survey results against those for recruitment as published by the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC).  Perhaps a patient-friendly ‘access map’ is called for?

Disappointingly only 32% of patients said they had had a discussion about research with a clinician or health professional, 68% had not.  This is more or less the same result as last year and suggests ‘patient choice’ to take part in research is struggling to get a lift nationally.  However, it is worth adding that the survey was conducted prior to the ‘Ok to ask’ campaign this year and a number of other local and national initiatives.

Yet, look a bit deeper and the variations are massive across from Trust to Trust (from 11% to 62%).  Reflecting on this and some of the feedback on our ‘Ok to ask’ campaign in May 2013 I would hazard a guess that more focus needs to be given to helping health professionals have these conversations and feel able to signpost patients and families in the right direction.

Finally, 64% of people went on to take part in research and 36% did not.  But again the variations are significant from Trust to Trust – from 37% to 94%.  Overall though, this result mirrors other evidence about the way people are positively disposed to taking part in research given the chance.

The report does not contain any discussion of possible reasons for the above results and perhaps this will be forthcoming although I am disheartened by the fact that I could see no reference to research in the Foreword to the report.

Much food for thought and I would welcome views…

It’s NIHR Friday – Public involvement: did the research network move for you?

NIHR Clinical Research Network Survey

Patient and Carer (Lay) Involvement in Research: Your Experience

The National Institute of Health Research (NIHR) Clinical Research Network (CRN) Patient and Public Involvement Steering Group is running a survey to capture how being involved in research impacts on patients and carers.

You should take part in this survey if you are a patient or carer (lay person) who is involved as a research partner or collaborator at one of the Clinical Research Networks.

We will produce a report summarising the findings from this survey.  We will use the information that you provide to encourage more people to get involved in research and to improve the experience for all individuals.  We will not be identifying individuals by name in the report.

If you are interested in taking part, we would like to hear your views.  Please click here to complete the online survey:

The deadline for completing this survey is Friday 26 July 2013.

 

New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?

This week, patients got a couple more options for finding out about clinical trials they can take part in.

Patientslikeme (which was launched in the United States a few years ago) has unveiled its new new clinical trials site which you can find here.   Patientslikeme is capturing a lot of attention here in the UK and one can see why.  Although this is still very much a first generation clinical trials site for so-called ‘willing patients,’ I like how it presents options and choices. Its interoperability with other parts of the Patientslikeme site (including the option to join other patients online) is also to be commended.  It is well worth a look.

Meanwhile in the States a new site called Reg4All has been launched by the non-profit Genetic Alliance (not to be confused with the UK’s own Genetic Alliance).  This one’s a register, inviting you to join others online and share as much as your personal health information as you so wish, to ‘help spark health innovation for all.’  It’s interesting how heavily they plug patient confidentiality with the privacy controls reported as being ‘unprecedented.’  Other than not signing-up at all of course.

Don’t forget there is also the Government’s very own UK Clinical Trials Gateway (UKCTG) whose future development I am very involved in, as well as ClinicalResearch.com,  TrialReach, HealthUnlocked, YourTreatmentChoices .  Funny how almost all of these sites miss out the spaces between the words in their titles isn’t it?  I wonder what that is all about.

 

Anyway, the market of organisations competing for the attention of patients entering clinical trials gets busier by the day.  This seems a healthy thing to me on the one hand.  On the other, I feel patients will want to see a ‘coming together’ at some point.  Although not necessarily in the way that you might assume; it might take many forms in fact.

Agreement on some common principles and standards for how to operate as in the manner of a learning health system (there are some interesting precedents in the US for this with respect to data use)? Partnership, merger or co-operation?  Perhaps formal regulation (by the Health Research Authority)?  But, most of all, integration with their care and treatment in the NHS and how this is provided.  There will also be a growing demand public involvement in how they work; more than any of the above providers can currently demonstrate.  Also,demands for reassurances over the ‘patient experience,’ with the AllTrials agenda just the tip of the iceberg in how I predict people will increasingly set higher expectations with clinical trial providers, and those who recruit on their behalf, before signing the consent form.

Finally, here is a brief interview with Scotland’s Chief Scientist, Dr Andrew Morris.  He talks about the importance of research being integrated into NHS care and treatment if we are to grow cohorts of patients who are active in research and the building of systems that enables that.  He references the well-known DART initiative in Scotland involving 7000+ people with diabetes.

I’m off to watch the rugby now.

How a Dame and the Great British Public might bring an end to the patient data pantomime…

The Health Service Journal (HSJ) has an ‘exclusive’ interview today with Dame Fiona Caldicott.  Dame Fiona has been chairing a review – of information governance in health and social care – ‘Caldicott2.’  Its report and recommendations are due out in just a few short weeks.

You have to subscribe to HSJ to read the full interview but you can find the accompanying news report here.  It would seem Dame Fiona and her review team will be making a case for a duty to be placed on health and social care organisations to share information where it is in the patient’s interest.   This would become an additional principle to sit alongside the six that already exist following the first Caldicott review in 1997. How very sensible.  

Sounds like the review will be equally sensible when it comes to its recommendations on the the handling of patient data for research purposes.  Thank goodness.  

The pantomime about the use of patient data for research has been allowed to go on for too long.  The policy wonks and the odd lawyer have selfishly hogged the stage in their horse costume.  Meanwhile, the Big Brother doomsayers have hovered in the background with an intermittently tuneful chorus of pro-research voices standing in the wings, imploring us to hand over our data.  As both sides have exchanged the traditional chants of ‘Oh yes you will’ and ‘Oh no you won’t’ few among their number have noticed or cared about the lack of audience participation.

How appropriate therefore that a combination of a ‘Dame of the British Realm’ and the Great British Public should bring us all to our senses.  For, let’s not forget, this review actually went out and talked to citizens and patients.

A few years ago when we were developing the patient leaflet ‘Your health records save lives’ , we initially got together a group of experts.  Cue a hideous stalemate of opposing and frankly irrelevant views (from a patient perspective , anyway) based on people’s interpretation of policy and law.  So what did we do?  We took the debate outside the room and asked patients and GPs what they felt, what they wanted to know, and how best to present this.  The leaflet (link above) is the result of that.  Shame that, despite its success out there, we can’t seem to find someone to fund its further production and distribution.

With that…and no other comment…I shall leave you with this story today about the Department of Health commissioned report by the Royal College of General Practitioners (RCGP) on GP practices providing online access to medical records.

The patient?  S/he’s behind you…..

 

 

 

 

OECD wades into clinical trials debate, but statement on public involvement goes awol

The Organisation for Economic Co-operation and Development (OECD) yesterday waded into the increasingly feverish debate about the regulation of clinical trials with a strongly worded recommendation calling on its members to harmonise approval processes.  The recommendation which is worded with the minimum of fuss, is backed by a more detailed explanatory memorandum.

But I am disappointed that the specific recommendation on public involvement from the OECD Global Forum on clinical trials  in October 2011 has not been carried through to inclusion in the documents issued yesterday.  As far as I can see anyway. The Forum had stated the following:

C.3 Increase patient involvement in clinical-trial processes
More direct involvement of patients in the design and monitoring of clinical trials – as well as
their contribution to improve the quality, safety and relevance of clinical research – is of
critical significance for the success and impact of clinical science as a whole.
The roles of patients in clinical trials should be strengthened by means of:
 Mandatory participation of a representative of patients’ opinion in ethics committees
(as such, they would be involved in the decision regarding future risk categories of
clinical trials).
 Consultative and participative role in the planning, design, conduct, dissemination
and implementation of results from clinical science, in part mediated through the
activities of the global networks as well as their regional and local network members
and through other relevant channels.
 Simplified informed-consent documents, containing the vital information for decision
making, using shorter and pedagogically sound explanations.
 Accessible information, for patients, families and the general public. This should
include educational websites, ad hoc documents and open dialogue sessions with
clinical staff at the hospital/clinical unit level, and transparent access to clinical
registers and information databases about planned, ongoing and completed clinical
trials by regulatory authorities.

I’ll do a bit of follow-up and report back!

How your NHS Trust works in mysterious ways when it comes to clinical research

Today the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC) has published the results of a ‘mystery shopper’ exercise it conducted last year to investigate how well NHS Trusts provide information about clinical research.  You may have seen a piece in last Sunday’s Observer which trailed this work and you may hear about it on your local radio station during today.

The results which can be found here will not surprise you, with most NHS Trusts not providing patients or signposting them appropriately.  The sample is small but, based on my own experience and that of colleagues, I think the findings are likely to be indicative of the picture across the country.  As a first round, this ‘mystery shopper’ exercise has been an innovative exercise and I was delighted to be involved in a small way at its inception.  It sets a benchmark which needs to be regularly tested and I would argue that it would now be interesting to see whether there is any correlation between those Trusts that are high-performing in terms of recruitment to clinical trials and the availability and quality of information.

In some senses the specific results – pity the poor hospital receptionist – are less important than the overall impression being given to patients about whether an NHS organisation is open or closed for doing clinical research.  I used to work with a CEO who used to say that you can tell the culture of an organisation just by walking through its front doors and gauging what he used to call ‘the smell of the place.’  In essence I think that’s what we are talking about today.

What next?  Well, as you will see, the report says that a resource pack will be developed to help NHS Trusts develop their information on research.  Whatever we do it is important that it is supportive and encouraging rather than admonishing.  Life for our NHS staff is hard enough as it is and we need to keep it simple.  I am rapidly coming to the view as I develop my programme on patient access that we need to embed patient champions in every NHS Trust to promote a more conducive culture – a little like embedded reporters in the army.  The NIHR CRN CC Involvement4Access project which I have mentioned several times before begins to take us on that road.    We also need to really support and help our hospital and GP surgery staff to understand why research is important and why it is important patients should feel comfortable asking about it.  It is people who drive culture.

 

 

Round round get around I get around – Caldicott2, patient data, dementia portal and more!

So sang The Beach Boys who were on Radio 2’s ‘In Concert’ this week.  Not that I’m a great fan but it seemed apposite given my week.  This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, Leeds (see below).  To think I used to spend three weeks every autumn to attend the party conferences.  It’s like regaining a bit of my life again.

But before I get into the meat of this blog, I just thought I’d draw your attention to a presentation on the ‘Caldicott2′ website (this is the review looking at information governance in the NHS including use of patient data for research purposes).  Made by Dame Fiona Caldicott earlier this month it shares some early findings from the review and also shows the next steps for this important piece of work.  Look under the Southern Informatics listing on this page.

I’m off to Leeds tomorrow to speak at an NIHR regional event – the first of four happening over the next few weeks – aimed at strengthening dialogue with NHS Trust R&D Managers against the background of much change in the NHS.  I am looking forward to getting to know this audience better and hope that, during my small walk-on part, I can convey the important role they play in delivering research which will lead to better outcomes for patients.  I think I am erroneously listed as ‘a patient’ on the programme and am wondering whether that means I take on the even more misleading definite article on the day, and am then definitive in every sense of that word thereafter.  Let me worry about that one.

I notice that several organisations have been pushing out their responses to the NHS Commissioning Board Draft Mandate (it being the deadline).  The King’s Fund document is compelling as ever although, as always after reading their documents, I felt a bit as if I should have taken that further degree after all.  It has a strong statement on ‘shared decision-making’ which succinctly conveys what this should be in practice.

The Association of Medical Research Charities (AMRC) has joined forces with other research funders to put in a very comprehensive response focusing on the research and innovation objectives in the Mandate.  Some good ideas in there including the point about better training for NHS staff on research, a point that was also made by Jonathan Sheffield (NIHR Clinical Research Networks) during The Guardian debate on innovation this week.  It’s certainly true that if patients are to see choice become a reality in research we need to do much more to make sure that NHS staff are ‘research-aware.’  Meanwhile I thought Cancer Research UK’s response was helpful about ‘patient choice’ saying (briefly) what needs to happen to make it work and what they might be able to contribute.  I think this is the key – organisations understanding that in this new environment what is pushed from the outside is going to be as, if not more, important, than what is put out from the centre. And I sometimes wonder whether the sense of shared responsibility has quite sunk in in some quarters.

Tangentally you might want to check out the blog I have written about patients and Academic Health Science Networks (AHSNs) for the Greater Manchester (AHSN) website.  Last week at the INVOLVE annual symposium for members it was interesting to hear people talk about their different experiences of working with AHSNs.  Helping support their work in trying to avoid groundhog day in these new organisations, is going to be a focus for the future I suspect.

This afternoon I tweeted about the national portal for people with dementia and their carers to register their interest in taking part in research and be informed about future trials.  It is being developed by DeNDRoN and will be developed shortly.  This really could be the most significant development in helping to nurture a research-active patient community since the Alzheimer’s Society set up QRD in the 90s.  The opportunity of the PM’s Dementia Challenge to give it the best start in life should not be missed and I’m looking forward to chairing the public involvement group that is going to help guide the portal’s development.

Seem to be on the road a lot from next week as well and look forward to meeting people in Birmingham at the next NIHR Regional R&D Day, the Mental Health Research Network (MHRN) conference and other places.  Reminds me I must buy Ben Goldacre’s new book to read on my travels.  And this from the US Federal Drugs Administration today seemed relevant.

There is no point to the javelin

It has come to this.  The world’s top tennis players rush their shots to beat an 11pm curfew.  Bruce and Sir Paul are turned-off mid-performance.  And they don’t use real javelins in schools.

Looking across the the athletics field at my sons’ school sports day, I spied a clutch of children competing in the javelin.  Except this is not a javelin as I remember it.  It’s more like one of those foam beach toys.  But nowehere near as good.  In fact it’s probably more like throwing a giant, over-ripe banana.  I admire the optimism of a small boy as he lets fly.  I imagine his disappointment as it is carried sideways by the wind and belly-flops to the ground.  There is no point to the javelin I mused.

UK scientists who have long complained about the blunt and risk-averse nature of the current EU Clinical Trials Directive, will no doubt be pleased by the Commission’s announcement today to bring in a sharper legislative instrument.  The new ‘Regulation’ will mean lighter touch regulation for ‘low-risk’ clinical trials and a streamlining of the regulatory process across the EU.  This, married with the EU’s recent enthusiasm for making trial data publicly available, also looks like good news from a patient perspective. Nature coverage here.

Whether it stacks-up against the five ‘wishes’ that the European Patients Forum (EPF) expressed during the consultation about the existing Directive remains to be seen.  The Forum hoped that any revision of EU law would result in:

1. Ensuring meaningful patients’ involvement across all aspects of clinical trials;

2. Giving patients access to quality information regarding clinical trials;

3. Meaningful informed consent;

4. Transparency concerning the results of clinical trials;

5. Access to treatments after the end of clinical trials.

Faster, quicker, leaner trials, yes.  Rules that reflect patient choice, voice and experience, I fear not.

The Commission’s own web pages have a stack of information available about the new Regulation including a ‘Citizen Summary.’ That all other documents constantly refer to research ‘subjects’ betrays the fact that the full extent of the patient agenda is not quite part of their core philosophy.  Indeed. the summary is just that, it doesn’t really convince in explaining how citizen rights and interests have been reflected in the proposals.

When is science, or more particularly medical research, going to wake-up to the fact that the effectiveness of modern regulation and modern regulators hinges on a partnership between those being regulated and their consumers?  Perhaps closer to home we might have greater cause for optimism.  The new Health Research Authority (HRA) has just had its second public involvement workshop and is working through the options of what might be tangible outcomes of this work as part of its business plan.

Back in Brussels, I hate to say it, but it still feels like we are being given foam arrows.  And with none of the fun of the beach.

Enjoy your summer holidays.

‘Caldicott 2′ Evidence gathering session on research – ‘patients and the public’ questions

‘Caldicott 2′ is the health and social care information governance review being conducted by Dame Fiona Caldicott with a due date for completion this autumn.  The title of the review is ‘Information: to share or not to share?’

I passed by the official website today and noticed that it now has a huge amount of information on there about the review panel membership, process and forthcoming evidence sessions.

Of particular note is the fact that the panel is holding an evidence-gathering session on research on  10th July and have invited submissions on the theme.  The above link will take you to the specific page about the research theme including a comprehensive document outlining the questions on which they are seeking views. This includes a ‘section 6′ which focuses on Patients and the Public and I thought it might be helpful to cut-and-paste these particular questions below:

Patients and the Public

a. What information should patients and the public be given about how their information is used and to whom it may be disclosed? How can we ensure patients and the public are better informed about research and how their information may be used for research?

b. How can patients’ and the public’s views and wishes in relation to the use of personal and confidential data be accommodated? To what extent should patients be able to exercise control over anonymised and pseudonymised data?

c. To what extent should minority views be accommodated within systems?

d. What and how should consent and the withholding or withdrawal of consent be recorded?

e. How granular do you think the consent recording requirements need to be?

f. The UK Life Sciences Strategy has proposed that the NHS Constitution commitments are amended to reflect the presumption that:

  • data collected as part of NHS care can be used for approved research, with appropriate protection for patient confidentiality; and
  • that patients are content to be approached about research studies for which they may be eligible, to enable them to decide whether they want a discussion about consenting to be involved.

Patients will retain the right to opt out but it will remove the current requirement for consent for the disclosure of confidential patient information to researchers.

What are your views of these proposed changes to the NHS Constitution? Do you have suggestions for how this might be implemented? Do you have concerns about the ways it might be implemented?

However, I encourage you to look at the full range of questions because many of the others are of relevance.

Details of where to send evidence too can be found here.

A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming

If only petrol was as plentiful a resource as public attitudes.  There is no end to the extent to which we can mine what the public thinks about this, or that.

Occasionally a survey will hit a rich seam of information and insight.  Then again, so numerous are those who are drilling into the public mindset nowadays, that I fear the small nuggets of interest reaching the surface are not without risk.  How long, I wonder, before the mountainous scree of data and information of dubious solidity reaches such a height that it obscures our horizon?

Heh ho! We can but hope that each in turn will move us a little further forward to where we want to get too, and that none do too much harm.  Have they asked the right questions, is it actionable, can we do something with this? These are the questions we should ask of such forays into the public consciousness?  And these two surveys do take us a little bit further forward I think…

Last week PatientView published the results of a survey it has conducted of 400 patient groups on the question of: what do patients value in healthcare?  There are some thought-provoking results embedded within it.  The fact that patients rate relief from symptoms and pain as highly, if not more so, than treatments which increase life expectancy is an affirmation of an issue that has long been articulated in the patient community.  Of all the money spent on researching new treatments and interventions, how much might be better directed at studying and mitigating the consequences of illness which impair a person’s quality of life?  Or simply making those innovations whose worth is already proven work better in the field – as Richard Smith, the former editor of the British Medical Journal (BMJ) suggests in his eloquent blog this week.

This week, I went to a preview of the results of a new report by the Wellcome Trust and the Medical Research Council (MRC) which will be published online shortly, entitled: “Assessing Public Attitudes to Health Related Findings in Research” this week.

It doesn’t quite do what it says on the tin because you could take that title to refer to giving feedback generally to participants in research?  (It doesn’t happen in case you are wondering).  In fact, the report is an examination – through survey and deliberative work with the public as conducted by Opinion Health – of people’s attitudes as to what should happen if researchers and clinicans discover something that has direct significance for the health of someone involved in a study.  I’ll let you read the findings for yourself in due course as they are worth reading as at least the basis for discussion on what should happen in this tricky area.

To be honest I was more absorbed by the mood music of the audience discussion afterwards: the view expressed by more than a few that ‘informed consent‘ for patients is a myth given that doctors are often making an informed guess about diagnosis and treatment; the sense that these dilemmas are not new ones to us but that the real difference is the amount, and  pace, of research and discovery and our capacity and capability to deal with the issues on such a scale and; that there is a need to think in terms of patient rights rather than patient preferences.

The most salient remark, however, was that perhaps we have reached a point where we need to re-think the way we do research; that it should no longer be seen as something that specialists do but should be conceived as the product of an evolutionary partnership between patients and researchers.  Actually, it wasn’t so much the remark that made me prick up my ears as the fact that it came from one of the industry representatives in the room.

There is much to praise about the two studies above.  But if only I could say the same of others.  For I do find myself coming away from reading or hearing other surveys feeling that the underlying premise for them is wrong and what they show, next to useless.

If I had a ‘£’ for every survey that reputedly showed the public doesn’t understand medical research or science I’d be able to open my own version of the Wellcome Collection.   But I wouldn’t know what to put in it because the question is often put so generally that the answer can’t possibly tell me much.  What don’t they understand: it’s value, the difference it can make to lives, why it is an important part of what the NHS does, why they need to take a certain medicine for their condition? Or do you mean how an MRI scan works, or the genetics of Alzhiemer’s?  If so, that’s a bit like saying you don’t understand football because you can’t relate the off-side rule in all its glorious detail.   However, we can’t really debate this further because the question doesn’t allow us.  Shame that.  But don’t worry, it probably props up a lot of misdirected or public engagement work so that’s ok.  Actually, it really is a shame.

Perhaps we need to give the public a bit more credit, beginning with the questions we ask of them.

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