NIHR

If you haven’t read Elspeth Mathie (@elspeth_mathie) and colleagues’ excellent paper ‘Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study’  in Health Expectations then I highly recommend a read over the next few days.  

Their small but significant study  – which was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England – is based on a survey of, and interviews with, public contributors and researchers. It shines a spotlight on the whole issue of feedback; the lack of which has been a source of some irritation for the public involvement community for many years.

 

For me the most striking thing about the paper is not so much its headline figures reporting that, while receiving feedback is important to the vast majority of contributors (82%), 19% had received none at all. Shameful though this is.  Or the fact that when feedback does happen it can take many different forms. Equally we should not be surprised that there are many different ways of giving feedback and a number of factors that can get in its war – from time, to changes in personnel to mention just two.

No, for me, the interesting thing to emerge from the interviews conducted in the study is that while some researchers saw feedback as a matter of courtesy (true), public contributors viewed it as an opportunity to learn and improve. Implicit in this is a sense that perhaps some researchers still feel they ‘have to’ do ‘PPI’ rather than see it as a valuable part of their work.  Perhaps the good news is that the experience of giving and receiving feedback seems to improve as researchers and contributors got older and wiser.

Perhaps the other key message that I have taken away with me is a reminder of the need to think about feedback at the start, rather than at the end, of a research project. For by the end it is all too late.  People are exhausted and want to move on. Deciding with public contributors at the very beginning of the project what you want to feed back, why and how you are going to use the information gained is extremely important.

As highlighted in the rather brilliant new ‘Guidance for Researcher: Feedback’ published by Elspeth Mathie and the team at the Centre for Research in Public Health and Community Care with the support of the East of England NIHR Research Design Services (RDS) organisation which I also highly recommend.

One final note. A commitment to give feedback and learn from it is a sign of a healthy team culture. As with many other things to do with team culture the tone and style is set at the top. Feedback is therefore one of those things that we should hold Chief Investigators and Principal Investigators accountable for.

Have a great weekend.

Oh, and feedback on the blog is always welcome. Thanks.

 

 

 

 

 

This week I had the good fortune to be on the judging panel for the NIHR Clinical Research Networks/McPin Foundation/MQ 2018 award for service user and carer involvement in mental health research.  It was a brilliant field to choose from. The winners will be announced very shortly.

One of the reasons I readily take up invitations to judge such awards – apart from the fact that I enjoy it – is that it is an excellent way of keeping up with what’s going on, the challenges and opportunities. This week was no exception.

Retention in public involvement

I am sure that I am not breaking any confidences if I say our deliberations highlighted once again the issue of ‘retention’ in public involvement. Or to put it more simply: helping people to ‘stick with it.’  Supporting service users and carers to remain involved and feel they are making a difference. Supporting researchers and research teams to remain committed to involvement. Building and maintaining relationships against an often chaotic background requires investment of many sorts by all partners: energy, passion, emotional commitment, resources, training. The list goes on.  Flexibility, a sense of humanity and an underlying philosophy of mutuality, staying true to values and principles tend to mark out the best teams (and by teams I am including patients, carers and the public).

Much as we talk about public involvement being a relationship business, the actionable evidence on how such relationships can be supported and sustained is weak. I am glad that some are now ‘on the case’ so to speak – read this blog report on a recent event in Manchester by the excellent Bella Starling for instance. See also this by healthtalk.org.

As a tangent I would also encourage people to read this week’s BMJ editorial by Kristin Liabo, Nicky Britten and others on clarifying the roles of patients in research. It is a reminder that being clear about roles and setting expectations is fundamental to getting such relationships off to the right start.

Retention in clinical trials

Then there is the matter of retention of people in clinical trials as participants. I was interested to see this recent survey by Applied Clinical Trials and SCORR Marketing as reported in ‘pharmaphorum’ which pointed to retention in clinical trials being a key metric for ‘patient engagement’ by pharmaceutical companies. Yet the same survey shows that most companies are performing poorly in terms of investing in their relationship with patients.  The NIHR CRN have done annual surveys on patient experience in trials for several years now and the results consistently show that relationships with staff are one of the key factors in maintaining people’s motivation to stay in a trial.  My anecdotal ‘add’ to this would be that the role played by clinical research nurses in this respect continues to be underrecognised.

But enough of the anecdote. If you want to help highlight the factors that help people stay in clinical trials then you can do no better than complete the survey being run by the PRioRiTyII project here. #PRioRiTyII

Staff retention

Another dimension to ‘retention’ which we need to talk about is that of our staff. It is an issue I care about deeply as NIHR National Director because of the growing number of colleagues fulfilling ‘PPI’ roles across the NIHR.  Passionate, committed, skilled, experienced, creative and yet sometimes regarded as curiosities in their own organisations. It reminds me a bit of when I was a ‘communications person’ (that’s what we were referred to) way back in the early ’90s. Now of course it is a brave organisation that goes into the public arena without the support of their Director of Communications.  How times move on.

Being the interlocutor between organisations and patients, carers and the public, facilitating, building and maintaining relationships between partners is not an easy ask. The work is more often than not rewarding and the sense of job satisfaction very high. My neighbour who came round for a birthday drink (hers not mine) yesterday said she thought it sounded like the best sort of work in the world.

But for some the working environment is difficult. In other instances it is openly hostile. Email bounce-backs from organisations – and what they say – are an interesting indicator for me of an unhealthy churn in personnel.  Some staff are not easy to deal with. Some patients, carers and members of the public are not easy to deal with. It can feel exhausting, demoralising to feel you have to beg for small scraps of money in multi-million £ institutions.

Truth be told we do not do nearly enough to support the growing number of men and women working across many health research organisations now supporting public engagement and involvement.  I am very conscious of this. Recently I have been talking to PCORI and CIHR in the US and Canada – where the same issues are being faced – about whether there is something to be developed jointly.  INVOLVE has a critical role to play of course. There are links to be made with what the university community is doing through the National Co-ordinating Centre for Public Engagement. Perhaps ‘PPI leads’ could begin to form themselves into a professional grouping as science press officers have done very successfully.  See the work of Stempra.

Staying the course can be hard to do whatever our role in research.  A more open discussion about the issues is important. We need to recognise the factors that contribute to mutually supportive relationships. An honest appraisal of what it takes to sustain these and a readiness to resource this effort is needed by funders and organisations

But in the meantime I hope you’ll be sticking with it.

I am.

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).

One of the unintended consequences of writing a blog is that it can be a helpful chronicle enabling you to trace the history of issues and events over many years. There is no better example than mental health research.

So I can tell you that it is three years since the Mental Health Research Alliance was formed (World Mental Health  Day, 2014).  Eight years since the Research Mental Health declaration (October 2009) when service users and mental health organisations first flexed their muscle on the issue of mental health research funding and support with one voice.  My abiding memory of the declaration is of Ruby Wax, comedian and mental health campaigner,  telling a reception at No.10 Downing Street that what came out of research – treatments, therapy, interventions – was the only sure-fire way of removing stigma.

A lot has happened in the meantime.  Whereas before we had no national charity focused solely on mental health research, now we have two – the ever innovative ‘McPin Foundation’ (2012) ‘ although its origins go back to 2007, ‘MQ Transforming Mental Health Research’ (December 2012) . We have also seen a series of James Lind Alliance Priority Setting Partnerships on depression (January 2016), bipolar disorder (August 2016) and, currently, children and young people’s mental health (2017) to name but a few.  In general it has risen up the health research agenda and was a significant theme in September’s ‘Future of Health’ report commissioned from RAND Corp by the National Institute for Health Research (NIHR).

The policy context to these developments is also important. Not least the publication of the Five Year Forward View for Mental Health in 2016   It is in response to a specific recommendation in the ‘Forward View’ that we have the latest development in this chronicle – yesterday’s ‘Framework for Mental Health Research’ (‘Framework’ is the in-word these days isn’t it?) published by the Department of Health but authored by a steering group representing the collective view of service users, voluntary organisations, funders and researchers of what needs to happen in mental health research.

That the service user voice has been involved in the development of the ‘Framework’ is clear from the ten recommendations in the document including this specific recommendation on involvement:

Recommendation 2: Patient and public involvement (PPI) (Stakeholders: Research funders, HRA, INVOLVE, Universities, Charities.
Patient and public involvement in mental health research should continue to be strengthened and systematically embedded throughout research regulation, ethics
and governance, shaping and determining research questions, assessment of research
proposals and research evaluation. User-led research as an emerging discipline,
generating new knowledge and investigating things that matter on a day to day basis to
people experiencing mental health problems, should continue to be strengthened. So too
should co-production in research, combining expertise of practitioners, healthcare
commissioners, service users, carers, policy makers and researchers together within multidisciplinary research teams. There is a need to make involvement more representative particularly by increasing inclusion of children and young people
and people with protected characteristics. Involvement in basic research should
be strengthened and requirements for involvement harmonised across research.

…..

The nods towards user-led research, co-production and young people are important statements, setting expectations to which the mental health research community will be held to account over the coming weeks. But, as important, are statements in other recommendations that recognise the importance of building public involvement capacity and capability in the research system – people, knowledge, relationships and places where the work can take place.

There is less said in the document about implementation. But, alongside yesterday’s  announcement of the ‘Framework,’ the NIHR also launched new mental health research funding opportunities for 2018 with a particular focus on ‘the promotion of good mental health and the prevention or treatment of mental ill health. Issues of particular interest include proposals that utilise new digital health technologies or investigate their effects.’   It will be important that all partners – and others as well – follow through on the recommendations with co-ordinated actions and activities.

My chronicle here only serves to demonstrate that policy takes time (frustratingly) to evolve. That its progress can be idiosyncratic, stop-start in nature, and sometimes requires two or three goes at the same idea before it takes off. But it is the overall trajectory that matters most, whether one can answer positively the question: ‘are we heading in the right direction?’

Coming on the back of the recent announcement regarding a new mental health research policy unit it does feel to me that with this ‘Framework’ we are entering a much more positive era for mental health research; founded on collaboration and with a clear place at the table for public involvement. It is crucial that we keep this momentum going.

 

 

 

Thought I would gently ease myself back into things after almost a month’s total social media detox at work by posting this news story from the National Institute for Health Research (NIHR) announcing the winners of #LetsGetDigital…..

The votes have been counted, the judges have had their say and the winners of the 2017 NIHR Let’s Get Digital competition have been decided!

The 25 shortlisted entries, across the five competition categories have been reviewed by expert judging panels and subject to a public vote through, which 2,251 people had their say. We can now announce that this year’s winners are:

Simon Denegri, NIHR National Director for Patients and the Public said:

“Congratulations to all the winners – the calibre of competition entries was extremely high so it wasn’t an easy judging process.

“It’s been great to see such a diverse range of entries to the competition and we hope to see this continue next year. It’s also been a pleasure to see so many people engaging with the entries through the public voting process, and we hope this encourages researchers to continue ‘getting digital’ with their research.

“It is this vitality and creativity across our community that will be so important to the NIHR delivering on its digital strategy in the coming months and years.”

The competition, which was brand new for this year, aimed to promote and recognise the ways people who are funded and supported by the NIHR can ‘get digital’ with their research, whilst raising awareness of research at the same time.

The 165 entries to the competition, and 2,251 public votes demonstrates the value of digital when it comes to engaging with research.

It is great to see the winners out there and I hope people will continue to support the  campaign by promoting the winning entries. They are excellent  examples of how to make research accessible in innovative, digital formats. All the shortlisted and winning entries can be found here.

…Why the detox I hear you ask? Well, as the saying goes, you can sometimes have too much of a good thing.

 

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.