National Institute for Health Research

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).

How many of you have arrived at a meeting, gasping for a cup of tea, and been presented with a scene not unlike the one in the photo below?

Coffee pots

An array of coffee pots.  All looking the same. But each holding something different. Coffee, decaffeinated coffee, hot water, tea (possibly). That’s before we even get to the white stuff. Milk, cream, semi–skimmed, soya, half-and-half. And so it goes on.

Yes, I know they are sometimes labelled. But not always. Many times the writing has been worn off. So there!

If you’re like me, you often arrive at events a bit harried and with the spatial awareness of someone coming out of an operation. So you plump for coffee, promptly pick the wrong pot and pour hot water into a cup. What to do? Hide the cup somewhere where no one will see it. Drink it – yuk! Or make the best of a bad situation and make a cup of tea which you didn’t really want. Now, where’s the English Breakfast tea bag among all those hippie herbal ones?

I suspect organisations, their staff and the patients, carers and the public can feel like this when confronted with public involvement. Where do we start? How should we do it? What does good look like? How do we know if we are doing well? Who says? What do we do if pour from the wrong PPI font of knowledge? Is there hope?

This very real challenge was recognised in the ‘Going the Extra Mile’ report and recommendations which was published following NIHR’s Strategic Review of public involvement in research.  Recommendation 2 said:

‘The NIHR should commission the development of a set of values, principles and standards for public involvement. These must be co-produced with the public and other partners. They should be framed in such a way, and with a clear set of self-assessment criteria, so that organisations across the NIHR see their adoption as integral to their continuous improvement in public involvement. The achievements of the public, staff and researchers in promoting and advancing public involvement should be celebrated and acknowledged by the NIHR.’

Now, the NIHR and it’s colleagues in the other nations of the UK ( a significant achievement in itself)  – the Public Health Agency in Northern Ireland, the Chief Scientist Office in Scotland, and Health and Care Research Wales – have launched a set of draft standards for public involvement for consultation.  The draft standards which have been developed from INVOLVE’s values and principles work a few years ago are as follows:

1.Inclusive opportunities – We provide clear, meaningful and accessible opportunities for involvement, for a wide range of people across all research.

2.Working together – We create and sustain respectful relationships, policies, practices and environments for effective working in research.

3.Support & learning – We ensure public involvement is undertaken with confidence and competence by everyone.

4.Communications – We provide clear and regular communications as part of all involvement plans and activities

5.Impact – We assess report and act on the impact of involving the public in research.

6.Governance – We ensure the community of interest voices are heard, valued, and included in decision making.

Now it’s your chance to shape and influence these standards and the indicators of good practice for each which have been developed by NIHR staff, researchers and public contributors over the last year and about which I have written before.

The excellent consultation web page has more details and resources explaining the draft standards, the indicators of good practice as well as information on how they were developed. It also provides slides and tools if you are planning to hold your own consultation event – I hope you do, it might be fun. There’s also a downloadable copy of the consultation questionnaire; if you want to go straight to the online survey you can do so here.  And the Welsh language version is here.

As the Academy of Medical Sciences recent said in its report on society and evidence, it’s time for health research organisations to wake up and smell the coffee when it comes to public involvement.

So this is an incredibly important milestone in the development of public involvement by the Government health research agencies across the UK. The standards will help all organisations to develop and embed public involvement, adopt good practice and measure progress in a constructive way.

The consultation ends on 1 September 2017 and there will be news on the next stage of their development at the INVOLVE conference on 28th November.

Over to you.

Have a good weekend.

 

 

Yesterday the Lancet published a study by Mona Nasser, Mike Clarke, Iain Chalmers and others looking at how well eleven international research founders are doing to reduce waste in research. This follows a series of articles by Chalmers et al over the last couple of years on the same issue.

The study scored funders using a traffic light system for the following:

Are patients and the public involved?
New research requires systematic reviews of existing evidence?
Public access to full protocols for completed or ongoing research?

Funding to undertake “research on research”?
The National Institute for Health Research (NIHR) was the only funder to score green for each one. The only other UK funder included in the study – the Medical Research Council (MRC) only scored a yellow for its public involvement. ‘Could do better’ as my headmaster would have said.

Other funders that scored green for their public involvement included the National Institutes for Health in the United States and Nederlandse organisatie voor gezondsheidsonderzoek en zorinnovatie (ZonMw) in the Netherlands. And try saying that after a glass of wine!

You can find the full paper here.

The National Institute for Health Research (NIHR) together with its Welsh equivalent, Health and Care Research Wales, have joined forces to launch a project to develop standards for public involvement in research.

The Public Involvement Standards Development Partnership has a website which went live today  where you can learn more and sign up to be part of a wider network that will help develop the standards over the coming months.

The debate about standards for public involvement has raged for years. East of Offa’s Dyke INVOLVE had developed a values and principles framework as a starting point. It was well received. Work to turn this framework into standards was given a fillip by the recommendation in in NIHR’s ‘Going the Extra Mile’ (2015) that:

“Culture: The NIHR should commission the development of a set of values, principles and standards for public involvement. These must be co-produced with the public and other partners. They should be framed in such a way, and with a clear set of self-assessment criteria, so that organisations across the NIHR see their adoption as integral to their continuous improvement in public involvement.” Going the Extra Mile report

Similar thinking had been taking place in Wales so it seemed logical for the two nations to come together rather than lock horns in taking the next step. Scotland and Northern Ireland have also shown an interest.

Preliminary work including a workshop has already taken place and you can find details of this work on the website. More importantly, the intended timeline for the project culminating in the publishing the standards at the INVOLVE Conference on 28th November 2017 can be found here.

This is a very important initiative. I appreciate ‘standards’ are not everyone’s cup of tea. But for organisations that are under constant – and I mean constant – pressure to demonstrate the impact of their public involvement work and by what measure, this work could be a ppi life-saver.

From an NIHR perspective my hope is that organisations and initiatives will be expected to adopt these standards and show progress against them.

Some of the leading life sciences organisations in the UK have joined forces to issue a ‘statement of aspiration’ about the involvement of young people in research saying:

‘Collaboration between young people and commercial researchers should become an established and normal way of working. Learning from this collaboration should be actively translated wherever possible to the adult healthcare/life sciences research setting.’

The roll-call of organisations who have signed the statement includes three of the largest pharmaceutical companies in the world, the ABPI, Ethical Medicines Industry Group (EMIG), as well as the National Institute for Health Research (NIHR), Nuffield Council for Bioethics, and Health Research Authority (HRA).  Other signatories are as follows:

  • The Association of the British Pharmaceutical Industry (ABPI)
  • AstraZeneca
  • The Ethical Medicines Industry Group (EMIG)
  • GenerationR
  • GSK
  • The Health Research Authority (HRA)
  • The National Institute for Health Research (NIHR)
  • Proveca
  • Quintiles
  • Roche
  • UCB

The ground-breaking communique notes the importance of collaboration between researchers and the people whom research aims to benefit, and highlights how this is  distinct from ‘market research’ and ‘one-off’ approaches by a funder.  It emphasises the value that involving young people can have in particular, and notes the leadership that the UK has shown in developing this work.

The statement has its origins in the GenerationR conference – which took place at the Science Museum in 2013 – and subsequent report and recommendations which called for closer-working with industry.  Work since the conference has included the setting up of a GenerationR website and last autumn’s establishment of a GenerationR alliance to bring together organisations to further the work.  Not to mention initiatives by other organisations, most notably the Nuffield Council on Bioethics ‘Children in Research’ report.

The idea of a statement to be the basis of further action between the signatories was proposed at a roundtable meeting hosted by the Nuffield Council for Bioethics in April.  The full report of this meeting can be found here.

More background on the NIHR’s work with young people can be found here.

Further contact details can be found at the foot of the statement.

 

My tickets for the FA Cup Final arrived in the post yesterday. I am very excited indeed.  I have a feeling that my team will bring the trophy home to south London where it belongs.

It is that time of year when football fans are living on their nerves as their team battles to win promotion or stave of relegation.  Fortunes – in every sense of the word – can change in seconds: a goal, a penalty decision, a sending-off.  Who knows what it will be?  I don’t expect everyone to understand this but to paraphrase Maxine Peake in the long-running legal drama, Silk: ‘It’s not about the football, it’s all about the football.’

You could say that, ten years ago, UK was in a battle to stay in the big league of countries doing clinical research.  Now it is regularly in the Champions League and often carries off a trophy or two.   The National Institute for Health Research (NIHR) has been instrumental if not pivotal to this success story.

I am deeply proud of the fact that patients and the public have not just featured in the NIHR story but have become an integral part of the NIHR team up and down the country.  It will be good to see many of them at a conference on Wednesday to mark the ten-year milestone.  I am particularly looking forward to taking the stage with a few of them to talk about how patients have made a difference to NIHR and what more we can do together in the future.

My passion for clinical research – like football – is very much a heart thing.  In fact when people sit down to explain the science to me I sometimes have the same expression on my face as someone trying to understand the off-side rule in football for the first time.  Perhaps I shouldn’t admit to things like that.  Nor, sadly, that I have been known to punch the air with joy at a news story about the latest, greatest piece of research. Just as I might a goal.

The sense of union one feels as a football fan – standing with thousands of others like-minded supporters – is conveyed in the singing of course.  Sometimes ebullient, often funny, occasionally imbued with a rich vein of gallows humour.  One of those chants is where the seated crowd are implored to ‘Stand up if you love….’ [insert team name].  And so we do, with alarms aloft, bellowing for our lives.

This time next week, across NIHR and the NHS we will be imploring people to do the same in the name of clinical research for International Clinical Trials Day (ICTD).  As I like to say to people, the NIHR ‘OK to Ask’ campaign and ICTD is more than just another awareness event.  It’s a pop-up festival with a purpose.

To shout loudly and proudly to patients and families across the UK that there is NHS research happening on their doorstep from which they might benefit. To thank the millions who have participated in studies to find new treatments over the last decade.  To enable patients, researchers, clinicians and health professionals to come together as a team and show others what they have been doing together in the name of research. With exhibition stands, events, tweet chats and a whole lot more at hospitals and institutions around the country from 20 May until well into the early summer.

UK clinical research is the team to beat.

OKtoAsk poster 2016