public involvement in research

This week I had the good fortune to be on the judging panel for the NIHR Clinical Research Networks/McPin Foundation/MQ 2018 award for service user and carer involvement in mental health research.  It was a brilliant field to choose from. The winners will be announced very shortly.

One of the reasons I readily take up invitations to judge such awards – apart from the fact that I enjoy it – is that it is an excellent way of keeping up with what’s going on, the challenges and opportunities. This week was no exception.

Retention in public involvement

I am sure that I am not breaking any confidences if I say our deliberations highlighted once again the issue of ‘retention’ in public involvement. Or to put it more simply: helping people to ‘stick with it.’  Supporting service users and carers to remain involved and feel they are making a difference. Supporting researchers and research teams to remain committed to involvement. Building and maintaining relationships against an often chaotic background requires investment of many sorts by all partners: energy, passion, emotional commitment, resources, training. The list goes on.  Flexibility, a sense of humanity and an underlying philosophy of mutuality, staying true to values and principles tend to mark out the best teams (and by teams I am including patients, carers and the public).

Much as we talk about public involvement being a relationship business, the actionable evidence on how such relationships can be supported and sustained is weak. I am glad that some are now ‘on the case’ so to speak – read this blog report on a recent event in Manchester by the excellent Bella Starling for instance. See also this by healthtalk.org.

As a tangent I would also encourage people to read this week’s BMJ editorial by Kristin Liabo, Nicky Britten and others on clarifying the roles of patients in research. It is a reminder that being clear about roles and setting expectations is fundamental to getting such relationships off to the right start.

Retention in clinical trials

Then there is the matter of retention of people in clinical trials as participants. I was interested to see this recent survey by Applied Clinical Trials and SCORR Marketing as reported in ‘pharmaphorum’ which pointed to retention in clinical trials being a key metric for ‘patient engagement’ by pharmaceutical companies. Yet the same survey shows that most companies are performing poorly in terms of investing in their relationship with patients.  The NIHR CRN have done annual surveys on patient experience in trials for several years now and the results consistently show that relationships with staff are one of the key factors in maintaining people’s motivation to stay in a trial.  My anecdotal ‘add’ to this would be that the role played by clinical research nurses in this respect continues to be underrecognised.

But enough of the anecdote. If you want to help highlight the factors that help people stay in clinical trials then you can do no better than complete the survey being run by the PRioRiTyII project here. #PRioRiTyII

Staff retention

Another dimension to ‘retention’ which we need to talk about is that of our staff. It is an issue I care about deeply as NIHR National Director because of the growing number of colleagues fulfilling ‘PPI’ roles across the NIHR.  Passionate, committed, skilled, experienced, creative and yet sometimes regarded as curiosities in their own organisations. It reminds me a bit of when I was a ‘communications person’ (that’s what we were referred to) way back in the early ’90s. Now of course it is a brave organisation that goes into the public arena without the support of their Director of Communications.  How times move on.

Being the interlocutor between organisations and patients, carers and the public, facilitating, building and maintaining relationships between partners is not an easy ask. The work is more often than not rewarding and the sense of job satisfaction very high. My neighbour who came round for a birthday drink (hers not mine) yesterday said she thought it sounded like the best sort of work in the world.

But for some the working environment is difficult. In other instances it is openly hostile. Email bounce-backs from organisations – and what they say – are an interesting indicator for me of an unhealthy churn in personnel.  Some staff are not easy to deal with. Some patients, carers and members of the public are not easy to deal with. It can feel exhausting, demoralising to feel you have to beg for small scraps of money in multi-million £ institutions.

Truth be told we do not do nearly enough to support the growing number of men and women working across many health research organisations now supporting public engagement and involvement.  I am very conscious of this. Recently I have been talking to PCORI and CIHR in the US and Canada – where the same issues are being faced – about whether there is something to be developed jointly.  INVOLVE has a critical role to play of course. There are links to be made with what the university community is doing through the National Co-ordinating Centre for Public Engagement. Perhaps ‘PPI leads’ could begin to form themselves into a professional grouping as science press officers have done very successfully.  See the work of Stempra.

Staying the course can be hard to do whatever our role in research.  A more open discussion about the issues is important. We need to recognise the factors that contribute to mutually supportive relationships. An honest appraisal of what it takes to sustain these and a readiness to resource this effort is needed by funders and organisations

But in the meantime I hope you’ll be sticking with it.

I am.

It’s all over the media today……

Only about one third of the British public say they trust the evidence derived from medical research.

Confronted with media hype, claim versus counter-claim, a paucity of good quality accessible information and time-short GPs, and with few reliable tools to help them, patients are struggling to make sense of scientific evidence.

Indeed, is it any wonder that two-thirds of people told an Academy of Medical Sciences inquiry that they would rather trust the experience of family and friends?

This is just one of the findings pointed to in a new report by the Academy of Medical Sciences – ‘Enhancing the use of scientific evidence to judge the potential benefits and harms of medicines’ – which sets out to forestall a crisis of public confidence in medicine.

The salutary lesson of the Academy’s work over the last two years (prompted by debates about statins, Tamiflu and the HPV vaccine et al)  is that medical research is great at producing new knowledge…..

…..It’s just generally hopeless at putting it in the hands of patients and families in the right way, the right place and at the right time so that they can make the right decision with their doctor.  More accurately, it’s poor at putting tools into people’s hands to make sense of the evidence and reach such decisions.

It is a problem for which responsibility must be shared across the health research system – research funders, charities, universities, journals – if not health and social care more widely. Not to mention the media who report on new scientific evidence as it is produced.

In its characteristically understated but authoritative way the Academy points to a range of measure for overhauling current practice if the public are not to switch off entirely.

From making NHS Choices a central repository of information on the benefits and harms of medicines, to regulators improving the accessibility and readability of patient information leaflets (this one has caught the eye of the media in particular), and the introduction of a traffic light system for grading press releases announcing research findings. Working with patients and the public the Academy has also produced a set of questions to ask as part of conversations they have with their doctor about medicines. is this medicine right for me

However, strengthening and improving the way society uses scientific evidence to make judgements about medicines, will also require fundamental changes ‘at source’ – in the way that scientific evidence is developed so that patient needs are considered in the design, analysis and evaluation of clinical studies and other experiments.

The report leads off with a recommendation that all research funders and researchers take steps to involve patients, carers and the public in research design, delivery and dissemination; to shift their perceptions of the role of the patient from that of a subject to that of a partner with an equal share in the process for producing evidence which has purpose and utility beyond an academic journal.

The good news behind this recommendation is that the UK is ahead of many other countries in involving patients and the public in decisions about research. From the recent appointment of the new heads of the Dementia Research Institute and UK Informatics Institute, to the work that NIHR and medical research charities such as Parkinson’s UK, Cancer Research UK and Arthritis Research UK have done to involve people in deciding what research to fund and how to do it.

One example of such work in the UK which is internationally influential is the adoption by many charities and patient groups of the James Lind Alliance (JLA) priority setting partnerships methodology to identify the top 10 research priorities in a particular condition or field as defined by patients, carers and health professionals. Around 100 such partnerships have been completed or are underway.

But we have some distance to go before these priorities are driving research funders and researchers in the way they should, and until outcomes that matter to patients are measured alongside those that are of interest to science. And recent campaigns such as AllTrials which is all about putting evidence into people’s hands suggest that there is still a good deal of kicking and struggling to happen on the part of the medical research community before it happens.

The Academy’s report may be a bitter pill to swallow for the medical research community. But the fact is that changing public attitudes will require collective action, with a good dose of public insight at its heart.

 

 

Last week I attended a National Institute for Health Research (NIHR) workshop on older people with complex needs.  The more common term used in medical and scientific circles for ‘complex needs’ is ‘multi-morbidity.’  Which means suffering from two or more conditions at the same time. But I prefer the former term.

As statistics from the Office for National Statistics (ONS) and others has shown we are spending many more of the twilight years our lives, managing and battling many conditions at the same time. Each comes with its own issues. Each is complicated by the existence of another. And another.

This is an issue for patients, for carers and the extended family. For health care professionals. For health and social care organisations.  Its increasing impact on society and how we care for others is shining a light on the deficiencies of our traditional approaches to science and indeed the practice of medicine which prefers to look at things in beautiful, controlled isolation, one condition at a time.

From service redesign to testing treatments on the older person (rather than the young and fit) and in real-time conditions: if ever there was a driver for much-needed change in the way we think about testing treatments this is it. Hence the focus of the NIHR and the reason for last week’s workshop – how do we get researchers to focus on the right questions in this pressing area of need?

In the autumn NICE (National Institute for Health and Care Excellence) issued new guideline on multi-morbidity emphasising the need for a more patient-centred approach.  So, I was delighted that we had such a strong contingent of public contributors at the meeting who were vocal in urging the research community to see the patient behind the complexity, to focus on what matters to them.

I particularly liked the comment by one of our number who said we need not just to think of the patient as if we are all the same but that each of us will have different needs and capabilities for managing their own care and the outcomes of research and how it is implemented must reflect this.  That means patients and carers not just setting priorities but identifying the outcomes that matter for them as well.

In my presentation to the workshop I talked about the four main themes that seem to make up the patient and carer perspective in this area. As follows:

Quality of life

–Impact on daily living, work, finance, leisure ; mental health and well-being; pain and fatigue; mobility issues; taking a patient-centric versus condition specific approach

Continuity of care

–Service organisation design and delivery – ‘care across organisational and professional boundaries;’ relationships with health care professionals; specialist versus general; communication; data sharing

Medicines

–Interaction between conditions, medicines and symptoms; understanding and managing medicine regime ‘30 pills a day;’ consequences of long-term medicines use;’ follow-up, monitoring and review

Self-management

–Prioritisation; understanding of enablers and barriers; language, tools, information, new models of care; supporting carers; technology

I shared one quote from a carer talking about the practical impact of helping her father manage multiple conditions:‘Without my help and encouragement [my father] wouldn’t attend multiple appointments, also dental, chiropodist, optician, GP, flu, vaccine clinics, dietician, physio and others important to his quality of life such as hairdressers and even vet appointments for his little companion dog.’

But this is just the iceberg. And, for reference, there’s an excellent healthtalkonline (those two words always seem to go together don’t they?) module on people talking about their experiences of coping with multiple health conditions which is well worth looking at if you are interested in this field. It deals with many of the themes I have identified above.  As well as many published papers on the subject by the likes of Trish Greenhalgh and others.

If you prefer something light-hearted but with a serious point behind it then I love this video of a sketch entitled ‘The Return of Ethel and Agnes’ by two patient advocates and colleagues whose real identities I shall preserve – at the 10 Year Anniversary of Keele University Research Users Group in September.

Complex needs, multi-morbidity, whatever you call it, this is one area where research priorities need to be driven by patients and carers.  Happily, Newcastle University with the support of the NIHR Biomedical Research Centre, NIHR Clinical Research Networks and EngageFMS are running a James Lind Alliance Priority Setting Partnership on Health with Multiple Conditions in Older People.  The web page for this is here. And, if you are on Twitter, you can follow its work on @JLAageing. It’s just getting going.

The fact that the Department of Health’s Chief Scientist, Chris Whitty, attended this meeting just shows how serious NIHR is taking this issue and the desire to make change happen.  That patients and carers were in the room to shape thinking is a good start.

But the proof in the pudding will come when things change for those coping with many conditions in the face of a system that can not see beyond its own organisational barriers or scientific obsessions.

Have a good day.

 

 

 

One of the things I feel incredibly fortunate about in doing my role is that people send me all sorts of interesting papers, articles, videos and other stuff.  I do get round to looking at them all, although it can take me a bit of time.

More often than not something will bubble to the surface quicker than the rest.  This might be because of its topicality, its wider relevance or simply that it has been brilliantly executed and is highly accessible.

This paper – Involving Service Users with Intellectual Disability in Research: Experiences from the STOP Diabetes Study – just published in the Journal of Policy and Practice in Intellectual Disabilities, seems to hit all these buttons and more.

It’s an almost forensic but nonetheless easy-to-read examination of the research team’s approach to public involvement in this important study.  Each aspect of the way in which people with intellectual disabilities are involved is looked at in some detail – from study publicity to the training of staff.

In what I think is a refreshingly honest and candid conclusion the authors then posit some recommendations that we would all do well to heed: the need to involve people early in the development of a research study; the importance of addressing practical barriers to involvement – from research setting to facilitation;  dealing with the pain of payment issues; the benefits of casting your net wide for people to involve; the fact that public involvement is an on-going activity not a smash and grab raid on people’s expertise and insight.

For me there’s a message running through this paper that with due care, proper planning and assiduous attention to the task, there is no such thing as a ‘hard to reach’ audience, only marginalised groups that we have excused ourselves from working with for far too long. A subtle but important difference.

The approach to public involvement in this study was by no means perfect – as the authors admit.  But the paper is all the more compelling and helpful for this reason. Anyway, what is perfect PPI?  I’ve yet to see it and would be suspicious if someone claimed to be doing it.

 

 

 

 

I didn’t think so.

Do you get those nagging calls about PPI? It’s usually early evening. Sometimes it is a recorded voice message. Sometimes a text. Very occasionally it is a real person from the unreal environment of a call centre. Unfortunately they are all contacting me about that other PPI – yes, Payment Protection Insurance. Those financiers and bankers really stole our thunder didn’t they when they called it PPI? (By the way you should go and see ‘The Big Short’ if you haven’t already).

Sorry, I digress.

If only, if only, we had a legion of sales people ringing innocent victims around the country to tell them about public involvement in research; to offer them the latest products which will make their day brighter and easier. At bargain prices and in any shape, size or colour that fitted them best.

Particularly to sell the message to researchers – cash-strapped, time short, expected to do more with less, downtrodden. Hang on, they sound just like patients and the public. Perhaps they are, secretly, when they are at home and no one is looking.

Fact is that we have lots of volunteers who do this round-the-clock. But we just don’t have phones for them and sometimes the products they need. But this week, two ‘how to’ guides have emerged that I think will be great additions to our stock.

The first – and I truly love this one – is a new guidebook to patient and public by Parkinson’s UK: ‘Patients and Public Involvement: A Resource for Researchers.’ It’s beautifully presented and a pleasure to read with lots of great advice. Parkinson’s UK is proof positive that you can go from being an organisation that is average in public involvement to being an exemplar. It just takes will and dedicated people with smart ideas.

I once rather flippantly referred to EUPATI as sounding like a dish you order from a take-away. But here’s one take-away from them you won’t regret (is it me or am I sounding more and more like a judge off Strictly Come Dancing). The European Patients Academy have launched their long awaited toolbox on medicines development that looks at every aspect of this activity including public involvement. A quick look suggests it is comprehensive and will be a rich and vibrant source of information. I particularly like the access to lots of current articles. Good job EUPATI.

It is said that when Robert Sherman sat down to write ‘A Spoonful of Sugar’ he was inspired by his children’s tale of being given their polio vaccine on a sugar cube.

The iconic song from Mary Poppins, lyrically captures a moment in time when the relationship between society, medicine and research was a more unquestioning and optimistic one. In such a state we all propped one another up with convenient folklore: all medicine is good for you it just needs to be sweetened to make it more palatable.  A suppliant population served medicine well, just as an over-confident profession let the population off from asking questions.

But now, over half a century later and after years of sugar-coated pills and doctors being given sweeteners by industry – this settlement is unravelling. Such is the level of concern at the fractious relationship that now exists, that the Chief Medical Officer, Professor Dame Sally Davies, last year knocked on the door of the Academy of Medical Sciences (AMS) for help.

What worries her most, she said, is the sense that society neither trusts its doctors to prescribe drugs appropriately; nor researchers to develop the evidence in an unbiased fashion. ‘How can we hope to improve the public’s  health if the public see less and less reason to believe us?’ is the underlying message.

The Academy is now undertaking an inquiry into how society can best use evidence to judge the benefits and risks of medicine. It is looking at a range of issues – from research methods to conflicts of interest and media reporting of medicines. I am a member of the inquiry along with Suzie Shepherd from the Royal College of Physicians Patient Network. A public dialogue exercise is planned later this year.

These activities will be important. But it occurs to me that the real task ahead is for us all to embrace that which currently seems most threatening. To encourage patients to ask more questions of their doctors and doctors to do the same of their patients. To turn the surgery into a place of shared inquiry where patient and doctor set out to search and understand the evidence together. It should not be to shore up the traditions and disciplines of yesteryear but to refute the sentiment that underlies them – as expressed in the song ‘The Life I Lead:’

Tradition, discipline, and rules must be the tools
Without them…Disorder! Chaos! Moral disintegration!
In short, you have a ghastly mess!

I seem to remember that when Mary Poppins is challenged she  famously replies, ‘I don’t explain anything.’ So it is that until now too many doctors have shown no inclination to explain to patients what they need to know. While those that do, tell me they do not have the time to do it as well as they would like.

In the meantime, patients lack the sort of informatiom presented in a way which will help them ask the right questions. As well as the support to help them make the right decisions for themselves and their family.  And yet, and yet, we could also assume greater personal responsibility for knowing ourselves and our health than relying on hearsay and folklore whether passed on by Disney or anyone else. To not be distracted by the whistling of a happy tune.

It’s a brave person or organisation that attempts to take Mary Poppins down. Even when she has been weakened by a sugar tax.

But it should be evidence, in the end, that we look for to help the medicine go down.