What next in identifying patient priorities for health research? #JLAevaluation

I spent yesterday morning at an excellent event looking at the James Lind Alliance Priority Setting Partnerships (JLA PSPs for short!). #JLAevaluation

Started in 2004, JLA PSPs have become a recognised and highly respected method for identifying shared priorities in health research among patients, carers and clinicians.  That they have is a testament to its founders but also the excellent JLA advisers and National Institute for Health Research (NIHR) support staff now working on them.

They are one of the success stories of UK public  involvement.  31 ‘official’ PSPs have been completed over the last ten years or so. 23 are underway. A further 86 wait in the wings for possible adoption. More than 26,000 respondents have been involved and over 350 treatment uncertainties identified in diseases covering the human body from head to toe.

Only this week, the National Institute for Health Research (NIHR) and British Society of Gastroenterology launched a PSP in alcohol-related liver disease.

Priority Setting Partnerships have undoubtedly contributed to the increasing cultural sensitivity across the UK health research system that it should be funding work of ‘relevance’ to patients and carers.  They are also becoming influential way beyond these shores. A colleague from Canada wrote to me this week to say that the Canadian Alzheimer’s Society is about to start a PSP. Others have taken place in Australia, Denmark, Sweden, Spain and the Netherlands.   They have entered the lexicon if not the rule book of public involvement across the globe.

But there’s no resting on its laurels. Yesterday’s meeting was about what comes next for PSPs.  Also on what needs to be done with regard to the wider challenge of identifying research priorities in any health research system. In my view there are a number of tasks ahead:

– As I said yesterday, collectively and individually PSPs are facing their ‘Strictly Come Dancing’ moment. In each disease area the resulting top ten treatment uncertainties or priorities take to the dance floor for potential funding by researchers and their institutions. Only the judges are predominantly scientists. No wonder few of them are left in the competition at the end. We need to work with funders and others to ensure that these patient-driven priorities are picked up.  That should not be the responsibility of JLA PSPs but it’s many partners and colleagues working across health research.

– We heard an excellent example yesterday from a team in Australia who had tried to do ‘JLA in a day.’ There have long been thoughts about developing a ‘JLA Lite’ version. I understand the concern of the methodologists and they are right to urge caution. But if JLA PSPs are now the skyscrapers of priority setting, we must also recognise the need for a village hall option.  My observation would be that JLA PSPs do not tend to close off the debate about priorities.  Rather they set the agenda for a more informed debate.  Smaller, more localised exercised that follow-up or are a presage to this work may have a place.

– Which leads me onto another possible innovation. PSPs have almost exclusively been concerned with specific conditions or diseases. But could we do this with local communities or neighbourhoods? To identify public health concerns for instance?  Similarly I would be interested in a focus on care and services and not only treatment.

– From an NIHR point of view we should ensure reviewers are aware of PSPs relevant to the programme or scheme to which they are applying. Applicants should be guided to explain in their application how their proposal will address them. And if not why not. For there may be good reasons.

– Finally, when I replied to my Canadian friend I said that I thought that a PSP was the single most important strategic intervention in research that disease specific charities and patient groups could make in research.  Working with patients, carers and professionals they would not just be informing their own funding strategy, but the whole field of science relevant to the disease area as well.  It would be good to see the Association of Medical Research Charities (AMRC) make this a recommended action of charities when – for instance – they are developing their research strategy which is an AMRC membership requirement.

Capacity, capability and quality will be issues that need further attention in the coming months and years.  It is great that JLA PSPs are homed in NIHR’s NETSCC organisation.  But they need to be part of the mainstream in how we think about the value of research.  In the same way that we now do about systematic reviews.  As I hope my thoughts about the future make clear, achieving this will be as much down to research funders, patient groups and other partners as to our excellent JLA colleagues.

It’s all about relevance.

Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?

Harpal Kumar, the Chief Executive of Cancer Research UK, yesterday posted a blog about the new task force he is leading for NHS England on cancer diagnosis.  The aim of the task force is to enable people to get an earlier and speedier diagnosis of their tumour in the future.  But it will also be looking at treatment and after care. The initiative is badly needed and it is encouraging that it has such a strong focus on piloting ideas rather than simply cogitating what ‘might be.’

Many of the Sunday newspapers picked up on the specific proposal to allow patients to self-refer themselves to specialists for diagnostic tests.  If you believe in patients taking greater control over how their health needs are met, then this sort of direct referral is the logical next step.

Who knows what it means for GPs though?  I think many patients empathise with their GP about workload and the pressures of the job.  But I am sure they are less than enamoured, as I am, by the way the profession presents itself.  One of the unwritten stories for 2014 is how the GP profession has successfully rebranded itself as the real victims of health service reform.  And there was I thinking it is service users!

I suspect I will be told that my view is just one person’s perspective or experience (and, yes, my family did have a less than brilliant experience of primary care this Christmas) and doesn’t reflect the ‘truth.’  However, I seem to remember the Kremlin saying this about its critics before the Berlin Wall came down.

The interesting thing about the issue of self-referral is that it also came out as a very strong signal in the public feedback about the UK Clinical Trials Gateway in 2012.  In the survey NIHR conducted, approximately two thirds of people said they would prefer to be given the option of going straight to a clinical trial unit to discuss the possibility of participating in a clinical trial rather than being referred back to their GP by UKCTG.  Why?  Well, again, it is this perception that their GP is the ‘middle man’ blocking their path – rather than being a gatekeeper – to trying new treatments.

Since then, there continues to be an increase in the number of research active GP practices thanks to some sterling work by the NIHR Clinical Research Networks.  But perhaps direct referral should be the way forward for research to increase patient choice and participation.  If this capability can not be built around our clinical trial units across the country, perhaps it is something that our Academic Health Science Networks (AHSNs) might think about supporting – a service in each region that patients could refer themselves too and take the strain off GPs and other serices.

Cancer might well be a good test bed for this and something the task force should consider.  One in three cancer patients have a discussion with their doctor about research with many of these going on to take part in research as a result (National Cancer Patient Experience Survey 2012-2014).

NIHR and NAPP announce new award for research engagement in primary care

This morning I was the guest of the National Association for Patient Participation (NAPP) whose annual conference entitled ‘Quality in Primary Care’ is taking place in Leeds today. It marks the end of their annual awareness week.

NAPP’s members are made up of several thousand Patient Participation Groups (PPGs) in GP practices up and down the country. They are an increasingly important network with an important role in bringing the patient voice to general practice primary care?

Judging by the questions from the packed hall this morning, PPGs are made up of an extremely savvy, well-informed and engaged group of volunteers. Simon Stevens would have been impressed.

They certainly put pointed questions to the main speaker this morning – Maureen Baker, President of the RCGP. I found her speech deeply honest and quite compelling especially on the issue of multi-morbidity and the absence of an evidence base for how to deal with this challenge. Indeed, the urgent need too if we are to future-proof general practice.

I can only point to the work of the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre NIHR GM PCPSTRC as a sign that the issue is beginning to receive closer attention.

Improving the evidence base about the impact of multi-morbidity and many other issues in general practice will only happen if patients and carers are engaged as partners in developing research questions, shaping methodology and helping to spread knowledge. Also in helping to recruit and increase participation in research studies.

Many PPGs are already actively involved in research: raising awareness about recruiting studies; providing feedback to researchers on the patient experience; advising on the design of research and; feeding back the results of work. But we want many more to become active. They also have an important part to play in influencing the commissioning agenda around research, locally and nationally.

So I am delighted that I was with NAPP colleagues today to launch a new national Research Engagement Award aimed at celebrating what’s already happening in PPGs and encouraging more to do the same.

We want to acknowledge the work PPGS are doing to:
– build a research culture locally
– promote clinical research network campaigns
– provide patient feedback and input into research

It’s dead easy to enter. Applications including more details on the entry criteria are available online at http://www.crn.nihr.ac.uk/crnappaward (if the link doesn’t work today try again on a Monday).

Entries must be in by 12 September 2014 and the results will be announced in October 2014. Winners get a small cash prize and, of course, national recognition.

It’s an exciting initiative and I hope will be as impactful as the HSJ awards in clinical research and the Nursing Times award will be for clinical research nurses.

Enjoy the rest of your weekend.

NIHR looks to go PROACTIVE with plan for research participation and engagement

Why shouldn’t you and I be able to take part in appropriate and relevant research as part of our NHS care and treatment?

Why shouldn’t we be able to expect to have that discussion with our doctor as part of our diagnosis and care?

Why shouldn’t we be able to access research evidence so we can reach an informed decision with our doctor about what is best?

The vast majority of us, when asked, want to take part in clinical and other forms of research.  Those who have been in a trial are eloquent about the benefits.

Surely we should aim to give willing people the opportunity and confidence to become active research citizens, to give willing patient populations the opportunity and confidence to become a research active community?

Through this wider engagement and participation we can also grow and strengthen the numbers of people actively involved in designing, shaping and delivering research with their partners in the health professions and research.

At the moment too many barriers are placed in people’s way.

That’s why NIHR’s ‘OK to ask’ campaign being run today, on International Clinical Trials Day, for the second year running is so important.  It is about removing those things that lie in our way to our active role in research.  It is important to remember that the original idea for the campaign – and its shaping -came from patients and carers.

A crude instrument it may be. Fledgling in its implementation at the moment, I would certainly agree. But it is a start and we have to start somewhere.

What’s important is that we have a long-term plan and commitment to work towards those three aspirations I set out at the beginning of this blog.

Today, the National Institute for Health Research (NIHR) has published its strategic plan for increasing citizen engagement and participation in health, social care and public health research (2014-2019) as part of a document entitled ‘Promoting a research active nation.’ 

The plan sets out a formal NIHR programme of work – called PROACTIVE for short – which it aims to support over the next five years, working with citizens, health professionals and NHS staff, funders and other research organisations to enable citizens to:  choose to take part in research; use the evidence on which their care is based and; have a good research experience and recommend it to others.

In some ways there is delicious irony in the fact that we run ‘Ok to ask’ on International Clinical Trials Day (20th May) which is itself a celebration of the day when James Lind started his famous ‘scurvy’ trial on the 20th of May 1747.  After all, the seamen who took part in his trial were most definitely ‘subjects’ of inquiry as opposed to participants.  But we have much work still to do.

Looking forward to my visits to the Maudsley and Barts later this morning.

 

NIHR makes plain English summaries a requirement of funding via @NIHRINVOLVE

Plain and simply good news from a citizen point of view. With thanks to INVOLVE and NIHR colleagues for making this happen,

Plain English summaries in National Institute for Health Research (NIHR) funded research.

The National Institute for Health Research (NIHR) is committed to making sure that each research study it funds has a clear and concise plain English summary. It is important that this information explains the research as a whole and is easy to read and understand. From14 May 2014 a good quality plain English summary, submitted as part of the standard application form, will be a requirement of NIHR funding.

What makes a good quality plain English summary?

It is clear, easy to read and is as jargon free as possible. It provides an overview of the entire research study that readers can understand straight away.

Why is it important?

A plain English summary is used in the following ways:


reviewers use this summary to inform their review offunding applications

summaries of funded research are made publicly available on NIHR and other research websites to inform the public and researchers

If it is felt that a plain English summary is not clear andof a good quality then the researchers may be required to amend their summary prior to final funding approval.

Where to get further information?

Visit the NIHR ‘make it clear’ webpage to find out

http://www.involve.nihr.ac.uk/makeitclear

Or contact the NIHR Research Design Service

www.rds.nihr.ac.uk/

NIHR Friday: BioResource launch has volunteers at its heart

Delighted to see today’s announcement by the National Institute for Health Research (NIHR) of the new NIHR BioResource. 

The importance of the new BioResource (the main website for the BioResource is here) is underlined by the fact that not one Minister but both the Secretary of State for Health, Minister for Health plus the Chief Medical Officer, Professor Dame Sally Davies, are quoted in the announcement.  Lesser events are lucky to get one of these on paper.  More than three (or, come to think of it, none at all) and it usually means we are talking about a crisis.

The NIHR BioResource is a shared enterprise that spans a number of our world-class Biomedical Research Centre (BRC) facilities in Cambridge, London (multiple sites), Oxford, Newcastle and Leicester.

But, at its heart, is a population of 75,000 volunteers – patients, family members and others – who wish to help further clinical research across a range of conditions.  As NIHR says in its announcement:

‘[NIHR BioResource] provides a national recallable resource of volunteers of patients, their families and from general population who wish to participate in clinical research across a wide range of studies. Volunteers provide clinical information and samples that allow them to be recalled by their genotype and phenotype (their physical characteristics) for experimental medicine studies and early phase trials.’

This time last year I was fortunate to visit the NIHR Cambridge BioResource Centre at Addenbrookes Hospital.  I came away being very impressed by the passion and commitment to public involvement shown by its leadership team including Dr John Bradley, the Director of the Cambridge BRC.

It was clear that they had done much to involve patients and the public in what they do but wanted to get better at it.  I seem to recall that much of my meeting with them was about how to involve the public more in the running of the BioResource, promoting it to the local population, and using what they learned to benefit other NIHR facilities in Cambridge as well as much wider.  The opportunity (and challenge!) for the future will be how to make public involvement relevant and effective across all the BioResource sites.

If you want to volunteer to take part in NIHR BioResource these web pages will tell you more.