The divide between public involvement in research and service delivery

Yesterday I was on a visit to the West Midlands.  The University of Birmingham, Birmingham Health Partners and West Midlands Genomic Medicine Centre (GMC) had invited me to talk about public involvement in research strategies for the region.

Many organisations and voices were represented in the room.  The discussion was lively and, at times, challenging.  But one particular colleague turned what was a valuable meeting, into an invaluable one for me.  Coming from outside the world of research and representing the world of public engagement in services and care provision she rightly asked (I paraphrase): ‘What is this?  Is this a parallel universe?  Why haven’t you been part of our discussion in service delivery over the last few years? Where have you been?’

These remarks should not be taken as an indictment of our colleagues in the West Midlands: I have heard it in many other places.  But it was a reminder, if ever we needed one, that often we need someone from outside our world,  to hold a mirror up to ourselves so that we can see who we really are.

On the train home I remembered another anecdote from a colleague some months back.  Again, it was in the context of a conversation about the need to bring researchers and care staff together more often to learn from and support one another.  She recounted to me that when she had tried to do this, the greatest reluctance was shown by her colleagues from the world of research.  Not those from service provision.  Research is research, and care is care, and ne’er the twain shall meet right?

Well, of course not.  But the point is that while we often talk a good game in public involvement in research about working with our colleagues in service delivery.  All with the aim of making research a bigger part of their thinking and vice versa.  We don’t follow it through. In fact, maybe we are just that little bit too comfortable in our ‘research’ silo.  And that might mean we are giving off the impression that we are too posh to get our hands dirty in the world of service provision?

This is not a new issue by any means.  I dug out the notes of a discussion on this topic from the INVOLVE Symposium in 2014.  Here they are, along with some of the suggestions for breaking down the boundaries (they can also be found on INVOLVE’s website here):

Discussion topic: What is INVOLVE’s role in bridging cultural barriers between involvement in research and service delivery? Issues raised:

  • Focus needs to be on how research contributes to service improvement. How do people involved in service delivery access research? How to interest them in research?
  • Challenge of different timescales in research and service improvement.
  • Realism about how much individual research projects and public involvement can deliver.
  • Researchers generally have bought into engagement not involvement. Conflation of the two.
  • Capacity issues in commissioning/service delivery. Practicalities more important barriers than cultural or language issues. New structures/plethora of guidance on PPI etc. PPI on the service side has fragmented as services have fragmented. There is no service side equivalent of INVOLVE. Trickle down from NHS Constitution to “shop floor” will take time.
  • Need to convince serviced providers that research will improve services, benefit patients and staff.
  • Lessons from research can be translated to service development.
  • Researchers not focused on dissemination. No money/status in implementation.
  • Lots of patient involvement in services we don’t see or understand.
  • How to ensure patients/patient groups have access to new research?
  • How to ensure patients/patient groups actively involved in service development can access learning and development opportunities available to those actively involved in research? Can we share what we have?
  • How do people currently use evidence of research outcomes to influence service provision?
  • Who has responsibility for ensuring research outcomes are shared with patients/the public, Clinical Commissioning Groups (CCGs)?

Discussions on what can INVOLVE do included:

  • Focus on how research can benefit health/how involvement in research can benefit.
  • Work with NHS England strategically – barriers are systemic not cultural divide. Opportunity to change this. INVOLVE can step in. Strategic link between those driving PPI in research and service delivery.
  • Simple local diagrams of new structures in service delivery and research, with simple explanation of organisational roles.
  • INVOLVE to facilitate strategic discussion across NIHR, NHS England, Health Education England.
  • Dual track – encourage linkage/mapping at both national and regional/local levels.
  • INVOLVE to signpost good local practice in joined up PPI working/shared learning.
  • Recognise key drivers on service side (key NHS Trust targets, etc)
  • Influence research commissioning to promote dissemination, engagement, implementation.
  • Engage third sector re research outcomes.
  • Look at effectiveness of dissemination/impact strategies.
  • Build on plain English work to help describe research as relevant, getting research into patients’ hands, demystifying research.
  • Advocate for participatory research.
  • Advocate for using existing research not just doing new research.
  • Raise research mindedness in service PPI.
  • How could INVOLVE help AHSNs and CLAHRCs do all this?
  • Look beyond healthcare involvement to learn how others involve/engage the public?

The discussion focussed on work that INVOLVE could do.  But, frankly, many of the things on the list should not be reliant on INVOLVE.  Nor can we use the fabulous work of our CLAHRC (Collaborations for Leadership in Applied Health Research and Care) organisations in trying to overcome these barriers as an excuse for doing nothing ourselves.  The onus is on us all to try and change the culture.

I know it goes both ways.  But perhaps our first move should be to open the door to our colleagues in service delivery.  And if they don’t come to us, we should go to them.

Patients, carers and the public would expect it of us I think.

George Osborne clearly read ‘Going the Extra Mile’ before his Budget statement #scipolicy

It is some time since the Chancellor of the Exchequer and I have spoken.  Forever, in fact.  But I like to think we are in tune on some things….

The Guardian online has an excellent piece running this afternoon – written by Kieron Flanagan from UMIST – about the nods and winks on science policy in today’s Budget Statement.

Later this week there will be a further ‘Productivity Plan’ unveiled by the Government.  This will give us a much more detailed insight into their thinking.  However, what we do know from today’s announcement is that Ministers are increasingly keen on re-engineering science funding  to emphasise regional strengths up and down the country. What one might call ‘locally inspired but strategically consistent’ science policy.  The strategically consistent bit being the end goal of increased productivity and greater wealth.

Clearly the Chancellor and his apparatchiks have read the strategic review of public involvement in the National Institute for Health Research (NIHR), ‘Going the Extra Mile’ (now available in a new and improved format).! In particular, recommendation 7 which urges a more regionalist focus to our patient-facing work:

Recommendation 7: Connectivity: What’s happening at grassroots level must continue to be the driving force in public involvement.  Here we wish to see further support given to work that is locally inspired and driven whilst strategically consistent with the NIHR overall goals:

  1. Regional public involvement, engagement and participation ‘citizen’ forums and strategies should be developed in each of the Academic Health Science Networks (AHSN) geographies. We would expect the NIHR’s Collaborations for Leadership in Applied Health Research and Care (CLAHRCs), Research Design Services (RDSs), Local Clinical Research Networks (LCRNs), Biomedical Research Centres and Units (BRC/Us) to play a key leadership role in the development of these.
  2. Regionally, locally and institutionally, NIHR infrastructure (CLAHRCs, BRU/, BRCs, LCRNs etc.) Directors and Boards should support and encourage public involvement leads to identify cross-cutting activity in public involvement and develop joint plans and stable resourcing where relevant.
  3. Regional and local partnerships should be identified by the National Director for Patients and the Public in Research to lead on tackling key challenges in the development of public involvement, beginning with diversity and inclusion.
  4. Building partnerships beyond NIHR boundaries – with health and social care partners, third sector and civic organisations – should be seen as a marker of success in this area and measured appropriately.
  5. Strengthening and improving the support available to researchers locally and regionally through current delivery mechanisms such as the NIHR Research Design Service.

Get those regional forums and collaborations up and running pronto, I would say.  For while the drive towards regionalism covers the whole of science there is no reason – in health at least – why we can’t make it citizen inspired and driven as well.

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.

Sign-up to help step-up research into dementia: new service enables people to volunteer for research studies #joindementiaresearch @beatdementia

Of all the dementia initiatives announced by the Prime Minister, David Cameron, this weekend it may prove the pivotal one.  It may not grab headlines in the same way as £ commitments to research or new institutes (although it is doing pretty well). But, without it, this expenditure will be worthless.

For other patient populations it will undoubtedly be a model to be copied in galvanising their effort behind similar research of patient benefit.

Fact is, as regular readers of this blog will know, research that could possibly make a difference to health and wellbeing can not happen without the involvement, and in particular the willingness of those people to step forward and volunteer to take part in clinical trials and research studies.  As was amply demonstrated by Fergus Walsh’s excellent Panorama programme a few weeks ago.

Today a new online and telephone service launches to enable people with dementia, carers, family – as well as members of the public wanting to support research – to sign-up to participate in future dementia research. The service also enables researchers to identify potential participants for their studies.

Called JoinDementiaResearch you can access the (mobile friendly) website here:

The service has been in development for over 2-3 years with people with dementia and their carers fully involved in the design of every aspect.   When the Lay Champions Group began its work all that time ago it is difficult to convey the daunting nature of the task that lay ahead of us or its complexity.  Giving people a safe and secure way of signing up for research in this way has felt like building a skyscraper on a small plot of land in a crowded city.  But the determination was always there and it is in no small part due to the commitment of those champions (many of whom will be speaking to the media today) and also the commitment of the organisations involved, to working in partnership with them,

Today’s  launch follows a pilot in North East London which has already demonstrated its exciting potential to enable studies to get up and running.  I notice that just in the last twent minutes or so that I have been editing this blog another 200 people have signed-up and the total number has just passed 2000.

So, what can I say, other than: JoinDementiaResearch Now!

Have a great day.

Here’s the full news release…..

Ground-breaking new national service empowers public to take part in vital dementia research

A new nationwide online and telephone service that helps people to take part in dementia research studies launches today (24 Feb 2015). Join Dementia Research promises to accelerate the pace of dementia research by allowing people with and without dementia to register their interest in studies, helping researchers find the right participants at the right time. Join Dementia Research is a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland and has been funded by the Department of Health.

Dementia affects over 850,000 people in the UK, with 25 million of the UK population having a close friend or family member affected. A new national poll* has shown that almost two thirds of the general public (62%) would be willing to take part in dementia research, but more than four out of five people (81%) wouldn’t know how to volunteer. Join Dementia Research is designed to overcome these barriers and give everyone the opportunity to play a role in changing the outlook for people with dementia now and in the future.

The lack of access to willing volunteers is holding back critical research into the condition with government figures showing that less than 5% of people with dementia take part in research studies. The first of its kind in the UK, this innovative new service will boost research participation by connecting people interested in research to suitable dementia studies across England, Scotland and Wales. After piloting the service in a small region for six months, more than 1,800 people have signed up and already over 200 of them have participated in studies through Join Dementia Research.

The website offers a secure and easy way for someone to register their interest, discover studies that interest them, and ultimately connect with researchers to take part in their studies.

Anyone aged 18 years or over can sign up themselves, or on behalf of someone else, either by registering online or by contacting the helplines of Alzheimer’s Research UK (0300 111 5 111) and Alzheimer’s Society (0300 222 1122). By signing up to the service, people give permission for researchers to contact them with details of studies in their area that match their profile. People can then decide if they would like to participate in those studies on a case-by-case basis. By registering, people do not have to take part in any studies and can opt-out at any time.

Prof Martin Rossor, the NIHR National Director for Dementia Research, said:

“The government and charities have increased funding for dementia research over the last few years, meaning more studies are being done than ever before, but it’s often difficult to find willing volunteers at the right time.

“Join Dementia Research offers a way of ‘match-making’ – linking volunteers to researchers. The system also helps us plan future studies. It’s important that everyone should be able to find out about research that is happening near to where they live and get the opportunity to be part of that research. People can register with Join Dementia Research without being obliged to take part in a particular study, but we hope that the service will expand the pool of willing participants. Growing the number of willing research volunteers will help push forward research to make advances in treatment, prevention and care.”

Secretary of State for Health, Jeremy Hunt, said:

“New research is desperately needed to help the growing numbers of people who live with dementia, which is why we’re doubling the size of the funding pot. This is an important initiative, and I encourage anyone who is interested to visit the website or call the charity helplines to find out more about how they can help us tackle dementia.”

Sue Boex, one of the carers who helped design Join Dementia Research, said:

“This is a very exciting initiative, and one we really need people to get behind. Everyone can sign up, whether you have dementia or not, and there are lots of different types of studies to take part in. But because studies have very specific criteria, we need lots of people signing up in order to find the right people for the right study at the right time. I hope that 100,000 people will join the service in the first year. Its an ambitious target, but dementia is a massive problem and we’re ambitious to help make a difference through research.”

Speaking about this new service, Hilary Evans, Director of External Affairs at Alzheimer’s Research UK, said:

“As a charity focused on dementia research, we’re acutely aware of the tremendous impact volunteers make on research progress in dementia. We know there is a strong appetite from the public to play a role in dementia research, but until now there hasn’t been an easy and coordinated way for people to register their interest. We’re proud to be supporting Join Dementia Research to give people with dementia and their families the opportunity to be part of pioneering research to improve the lives of everyone affected by this heartbreaking condition.”

Dr Doug Brown, Director of Research and Development at Alzheimer’s Society said:

“We and others are increasing our investment in research to develop better treatments and ultimately a cure for dementia, but finding suitable volunteers to take part in these research studies is a difficult and costly task. This can slow research progress which is unacceptable given the urgent need of the hundreds of thousands of people affected by dementia.

“We’re thrilled to be supporting Join Dementia Research as it will overcome many of these barriers and speed up the ongoing research effort. For people with an interest in dementia research, this innovative new service gives them the best possible chance of finding and taking part in a suitable research study, empowering them to be part of the crucial search for better care today and a cure for the future.”

Professor Dame Sally Davies was appointed Chief Medical Officer:

“This superb initiative was developed to help ensure we can meet the ambitious targets for recruitment to high-quality research studies, set by the Prime Minister in his challenge on dementia. Join Dementia Research is a potential pathfinder for other fields, showing how to boost patient and public participation in research.”

Current research studies range from clinical trials of new treatments to surveys identifying what works in improving the quality of life of people with dementia.


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).

Read all about it #WorldMentalHealthDay – Research Special!

In case you have just woken up, today is World Mental Health Day.  This year’s focus is on schizophrenia but a lot of other things are going on about mental health issues in general.

In no particular order, but with thanks to friends and colleagues for sending these to me, here are some interesting things happening with a research flavour:

A new Alliance of Mental Health Research Funders (AMHRF) has been established with some fantastic names associated with it such as the McPin Foundation.  The Alliance has been quick of the mark in issuing a manifesto for mental health research with one eye most clearly on next year’s General Election.

The British Psychological Society and Royal College of Psychiatrists have called for more funding for mental health research.  See here. A special issue of Evidence-Based Mental Health has been produced with a focus on schizophrenia and the magazine is also doing a tweet chat on 17th October – hashtag is #ebmhchat.

From an NIHR point of view you may wish to check out the PARADES study being conducted out of Nottingham University looking at bipolar disease.  It’s £2 million over 5 years with the aim of helping people with bipolar disease manage their condition themselves.  Official NIHR stuff here.

It would be remiss not to mention the new James Lind Alliance Priority Setting Partnership in bipolar disease being conducted by the NIHR BRC at Oxford, the mental health research charity ‘MQ’ and others.

And the Secretary of State for Health Jeremy Hunt is making a speech at the Royal College of Psychiatrists today setting out a ream of new measures including a push to get FTSE 100 companies to sign up to the Time to Change anti-stigma campaign, performing performance tables for NHS Trusts of mental health, and asking the College President, Simon Wesseley, to lead a group to define good mental health practice.  How do I know? Because the Dundee local press say so.

Very happy to add contributions and other items.