Association of Medical Research Charities

White, middle-class and well-connected – and that’s just the patients: is this the health research culture we wish to see in the UK?

Ever since it was established in 2011, the Health Research Authority (HRA) – the UK regulator of health research whose mission is ‘to protect and promote the public interest’ – has commissioned a regular survey of the general public’s attitudes towards health research.

Today sees publication of the latest of these surveys, this time jointly with the National Institute for Health Research (NIHR). The survey was conducted in April 2017 by Ipsos MORI summer and consisted of face-to-face interviews with 1014 adults aged 15 and over. The survey findings are the most recent insight into UK public attitudes to be published.

Some clear positives emerge from report which you can find here. Also on the NIHR website here.

Consistent with other surveys (including the last HRA one in 2014)  showing strong public support for health research, 83% of respondents said that health research is very important. 91% of respondents said they would be confident that they would be treated with dignity and respect if asked to take part in a research study, compared to 89% in 2014 and 82% in 2013.

Given the UK’s patchy history of engaging the public in a debate about the issue of personal data. Not to mention the  national data opt-out programme being rolled-out in May. We can take some encouragement from today’s findings which suggest increasing public confidence about how their data is treated. 80% of respondents said they would be confident that their personal data would be held securely if they were asked by their doctor to take part in a health research study in the UK. 26% of respondents said they would not be. In 2014 the respective figures were 72% and 18%.

On some issues, however, opinions seem rooted to the floor. People still have least confidence in health research studies undertaken by the pharmaceutical industry.  But on the other hand, the knowledge that people’s confidence in pharma research grows once they know it works closely with the NHS, may be a foundation for promoting further partnership working which shows a different side to the industry. I am sure this will be an important topic of conversation at the AMRC/ABPI Patients First ‘Pioneering Partnerships’ conference on 20th March.

But perhaps the starkest findings for me are those that shine a light on the differences in attitudes to research across different groups related to ethnicity, social class and working status.

If you are white your expectations of being treated treated with dignity in health research are greater than if you are from an ethnic minority (52% versus 35%). The same is true if you are better off (59% of those in social class AB versus 39% of those in social class DE). And the findings point to a similar picture when it comes to educational level. It is also worth adding that only 26% of respondents from an ethnic minority were very confident about the use of their data compared to 37% of white respondents.

These differences matter. Last year a slate of policy reports was published that highlighted the need for health research to collectively change its ways if it was going to produce knowledge and outcomes that reflect the needs of an increasingly diverse population. This includes breaking down the barriers that make people from these groups less likely to want to be part of research.

But nor are these differences new to us. The ‘Going the Extra Mile’ strategic review of public involvement in the NIHR highlighted diversity as a key issue issue which has resulted in a dedicated work-stream being taken forward by INVOLVE . Look out also for publication of the final PPI standards by the four UK nations on 20th March. However, in other countries the debate about under-representation of certain groups has raged more strongly.  This article is quite a good example of how that public discussion is unfolding in the United States.

But given the highly collaborative health research system we have developed in the UK perhaps we have an opportunity to use this strength to collectively take prolonged and considered action where others might find it more difficult to take a strategic approach. But it will require leadership from the very top as well as action at grassroots level, working with community leaders, voluntary sector groups and others who can build bridges in meaningful ways.

 

James Joyce once said that opinion polls were like children digging up flowers to see if they were growing or not. But sometimes such polls are important in highlighting issues and pinpointing instances where some re-planting is necessary. In this instance, my sense is that we need to be growing research in the communities and places where under-represented groups in research live and work. Not be expecting them to come to us.

Have a good day.

(tomorrow I’ll be having a quick look at some of the other findings in the survey and what they mean for health research and public involvement).

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.

We have just passed the mid-way point in the ‘evidence-gathering’ phase of NIHR’s strategic review of public involvement entitled ‘Breaking Boundaries.’  So here’s an unofficial Chair’s view.

The announcement of the review on 31st March, its terms of reference and our initial call for views can be found on NIHR’s website here

People can at the moment choose to respond to the review using the downloadable questionnaire on the website, or using the online survey which is available here.  So far, almost 200 people have responded to the online survey.  61% have said they are a service user/patient/consumer/carer.

In addition there is now a facilitator guide as well as some PPT slides available for people who are planning to hold a group discussion with patients, carers and colleagues before responding.  Our sense is that quite a few organisations are planning to do this as part of their response.  Anyway, the guide and the slides can be found at the end of this post.

Also over the last month we have held discussion sessions at four meetings where the excellent RAPPORT study of public involvement was reported. These events took place in Manchester, Bristol, London and Cambridge and reached about 200 people, again mostly patients, carers and members of the public.  Thinking about these sessions and the sorts of comments we are getting through the written and online survey evidence, some key issues and questions.  Thematically, these might be headlines:

  • The purpose and value of public involvement
  • The infrastructure needed, national, regionally and locally, to deliver public involvement
  • The resources necessary to deliver public involvement that works
  • The importance of relationships to the success of public involvement
  • The learning (knowledge, skills, experience) needs of all partners and how to support them
  • The need to tackle the impact and outcomes agenda

We have also held two ‘international’ sessions by phone with colleagues from Canada, USA, Denmark, Australia and the European Union.  It was clear from these conversations that the UK is held in very high regard for what it has achieved in public involvement; we are the recognised leader in many respects. Also, that this leadership is closely associated with the work of INVOLVE over the years.  Nonetheless, we have much to learn from them.  We are all battling with the need to prioritise and find models suited to the future not the past or present.  The case for an international alliance or association where we can share our ideas and challenges is growing in strength.

This week we will be meeting with representatives and members of the Association of Medical Research Charities (AMRC) and Association of the British Pharmaceutical Industry (ABPI) to get their views on public involvement in research.  Heading into June there will be a range of events where we will be holding ‘consultation’ sessions including North West People in Research Forum on 30 June and the Health Services Research Network (HSRN) conference on 19/20 June.  And, finally, some yet-to-be scheduled tweet chats and social media activity.  Please remember that the hashtag is #PPIBreakingboundaries

Please keep the responses coming in.  I know I speak on behalf of all the review panel when I say they are insightful, helpful and hugely important in their own right.

The  previously mentioned guide can be found here: 

  And the slides can be found here:

I am sure the new Health Research Authority (HRA) can take care of itself.  But the expectations being heaped on it by others show no signs of abating. I wouldn’t be surprised if tomorrow someone calls on it to cure cancer. If it had been created by a Blair Government it would surely have been dubbed ‘The People’s Health Research Authority.’ Come to think of it…..

Why do I say this?  Well, the committee of MPs and Peers looking at the draft Care and Support Bill establishing the HRA has just published its report; the Association of Medical Research Charities (AMRC) has provided an excellent overview of their conclusions here .

The key message from the committee is that the HRA should be ‘promoting’ research.  I am sure this is right. But the very real problem for the HRA is how do you define this in practice?  For the answer is potentially as long as a piece of string.  There is certainly a real danger for mission drift if it’s not careful. There is also some irony in the fact that it was onlya few short weeks ago that three eminent Peers wrote to The Times criticising the HRA and other regulators for the amount of money spent on media and communications. Damned if you do, damned if you don’t (see my blog on this from just a few weeks ago).

Did anyone else also raise an eyebrow at the conclusion parliamentarians drew that there is ‘no single body promoting health and social care research?’ Er, the National Institute for Health Research (NIHR) perhaps? For one.  It feels that the Committee has assumed the body language of funders and researchers when it comes to this thing called ‘promotion:’  quite simply they are good at promoting their own science but when it comes to promoting science in general it is rapidly becomes someone else’s responsibility. And often the responsibility of organisations that are already running on vapour in terms of resources.

Yet it is evident from the conversations I have had with colleagues thus far that generally they have been encouraged by the quietly efficient and logical way that the HRA is going about its business.  It’s approach to public involvement seems sensible given the lack of precedence for where it wants to head.  Its stakeholder event a few weeks ago was, by all accounts, excellent.  It is steaming ahead with its pilot of speeding up approvals.  These are all good things and it is important that we support their endeavour in the coming weeks and months if it is to become the fair but robust regulator we all wish to see.

Across the Committee corridor the House of Commons Science and Technology Select Committee has just  published all the written submissions it has received as part of its inquiry into clinical trials.  Some of these submissions are filtering into the press.  And this evening I noticed this piece from Outsourcing Pharma.Com about the evidence of the Clinical Contract Research Association (CCRA).  It again puts the onus on the HRA pulling things together. (By the way, I was just as interested in CCRA’s call  to simplify consent and other complex processes which stand in the way of patients taking part  in trials).

As it takes oral evidence, Committee  members will focus in even greater forensic detail on the role of the HRA in promoting transparency in the registering and reporting of clinical trials.  The Care and Support Bill Committee took a strong line on this and says HRA must lead the way.  I would agree 100% with them.  But HRA can only do this if it has strong political backing from the beginning and when it is having to face down the recalcitrant funder or researcher who won’t play ball.  All on the basis that it is just ‘red tape’ preventing them from doing their life-saving work.  For it is at those moments that the wind is often taken out of the regulator’s sails by a lack of courage of the part of our politicians.

So how the Committee chooses to deal with this particular issue is going to have an important bearing on the future workload of the HRA and how it is monitored in parliament.  In the meantime, the Care and Support Bill will establish its formal role.

Yep. There’s no doubt about it. All eyes are on the HRA and this is just the beginning….

I am prone to beating up our Royal Colleges for one reason or another.  But, over the last few years, I have grown to admire and respect the work of one of their number in particular – the Royal College of Paediatrics and Child Health (RCPCH).

Yesterday, RCPCH launched a new report entitled ‘Turning the Tide: Harnessing the Power of Child Health Research’ which is part progress report and part agenda for change.  The College’s campaign will aim to:

  • Debunk the myths surrounding clinical trials – and push for the introduction of a system of ‘opting out’ of  studies designed to reduce uncertainties in treatments, rather than ‘opting in’
  • Bring organisations together in a UK “Children’s Research Collaboration” to optimise use of funding for research and raise awareness of the need to strengthen children’s involvement
  • Improve education, research training, and guidance for paediatricians: with the RCPCH pledging to improve research training for all paediatricians  and clear routes into research careers
  • Strengthen the infrastructure for children’s biomedical research in the UK by supporting the establishment of a children’s trials network for non-medicines as well as medicines studies, and children’s health sciences networks to share resources, and promote cross-institutional collaboration between paediatricians, adult physicians, and non-clinical scientists researching the early life origins of adult diseases

There’s a very powerful section in the report about what the NHS should be doing which you could read across many, if not all, other conditions.

Two additional comments.  The idea of a UK Children’s Research Collaboration (UKCRC! funnily enough – see yesterday’s blog) is a good one.  Quite apart from the greater co-ordination of efforts that would result, precedent suggests it will also help amplify the message (one of the points Richard Smith noted in his BMJ blog today about charities needing to work together more).  The arguments in favour are given further force this afternoon by the news that donations to medical research charities are now falling (see AMRC blog).  Quite simply it is about efficiencies of scale.

I’m also delighted that RCPCH and its partners are going ahead with the idea of a ‘children’s charter.’  The College seem to have developed a strong public involvement model of working and I went to one of their meetings with young people and parents a few months ago as part of the ‘Turning the Tide’ preparation work.  This was an idea that came out of that meeting and I am pleased it has gained credence with the report authors including Neena Modi, Vice-President at the College.  In setting out children’s rights and expectations when it comes to research I am sure we would all wish to support and applaud its development.