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.

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