patient and public involvement

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.

Two blogs in one day. Blimey. I’ll be giving away small packets of face cream or toys with the next issue at this rate.

Someone asked me recently whether co-production was going to be the only thing that mattered in the future. Is all that is currently known as public involvement going to be painted over as co-production ? In the way that Prince re-branded himself as the artist with no name. Would we be saying to friends, family and colleagues in the future ‘I’m pro co-pro, are you?’

Well, no, I am sure you will be pleased to hear.  Truth is that co-production is emerging as an approach that looks to have increasing utility in getting people to work differently in health research. It is another string to our bow. Part of the secret of its future success will be identifying its relevance and appropriateness, the contexts within which it will work best and with the best results.

As already presaged in this blog some time ago, INVOLVE has been working on some co-production principles building on previous work particularly in the social care field. Those principles are now finished and have been published today and you can find them here.

And in short-hand those are principles are as follows, but I won’t spoil it by saying the rest. Read and enjoy.

Key Principles
Sharing of power – the research is jointly owned and people work together to achieve a
joint understanding
Including all perspectives and skills – make sure the research team includes all those
who can make a contribution
Respecting and valuing the knowledge of all those working together on the research
– everyone is of equal importance
Reciprocity – everybody benefits from working together
Building and maintaining relationships – an emphasis on relationships is key to sharing power. There needs to be joint understanding and consensus and clarity over roles and responsibilities. It is also important to value people and unlock their potential.

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.

two-sides-poster-1-thumbThe UK National Institute for Health Research (NIHR) has launched a striking new poster campaign entitled #twosides to raise awareness of the importance of patients and the public to making health and social care research happen.

There are three posters to choose from in the series and you can download or order posters here.

These pages on the NIHR website give some examples of the way in which people can get involved with the NIHR and contribute to its world-class research.

We hope that people will put the posters up in their hospital, surgery, at events and meetings – wherever you think they might help to raise awareness.

The is the first time that the NIHR has done such a poster campaign on public involvement and we hope it will start the conversation about public involvement where you are.

 

If you follow me on Twitter (@SDenegri) you might notice that I regularly RT the work of the McPin Foundation which exists to ‘transform mental health research by putting the lived experience of people affected by mental health problems at the heart of research methods and the research agenda.’ It’s a fabulous organisation.

Prior to Christmas they produced the second of their Talking Point Papers – Patient and Public Involvement in Research: Why Not? Written by McPin Researcher, Kirsten Morgan, and based on copious interviews with people in mental health research, it’s an excellent overview of the key issues in that field.

For me personally, the strongest message I heard was a desire on the part of public involvement’s die-hard fans and its sternest critics, to stay clear of dogma; to focus time and attention on how, when and where public involvement can make the most difference to research: pragmatic, proportionate, purposeful.

You may have seen the new ‘We swear’ public awareness campaign by MQ Transforming Mental Health on buses and in the media. It is trying to draw attention to the lack of help and support available to young people and how research might help. The challenges in young people’s mental health are stark as today’s report by the Royal College of Paediatrics and Child Health shows.

Young people must be at the heart of development the research agenda as I am sure you will agree. So I’m delighted to hear that McPin is setting up a new Young People’s Mental Health Advisory Group to help run a Priority Setting Partnership to identify the to ten research priorities in young people’s mental health.  If you are 14-24 and interested in joining or know someone who might be, further details can be found here.  Applications need to be in by 13th February I believe and places are limited.

Finally, you may recall that last year a Mental Health Taskforce Chaired by Paul Farmer (Mind) published a comprehensive report and recommendations on improving mental health. In January the Prime Minister followed up with a keynote speech on mental health with a big focus on young people. You can see some of the detail of the latter announcement here and the NIHR ‘call’ that it put out on the day here.

Talking with people in the Department of Health last week it was good to hear how progress is going with the development of the Taskforce’s recommendation of a mental health research strategy. Also, how people with mental health issues have been involved in its genesis so far. There is much work still to be done but mental health may at last be getting the focus in needs.

In the meantime if you wish to keep on top of the NIHR’s mental health research results you can do so via its NIHR Dissemination Centre ‘Signals’ here.

Watch this space. It’s going to be a busy year in mental health research with an important part for us all to play.