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.