public involvement in health research

More often than not, public involvement in research is poorly reported when it comes to the results of studies being written-up in academic papers.  

That means we – the public, researchers, clinicians and all others involved in doing research – are missing out on the cumulative knowledge and experience of others on ‘why,’ ‘how’ and ‘to what effect’ public involvement has played a role.   People are reinventing the wheel not by choice. But because there is a lack of written-up evidence to learn from, to guide them.

There are many reasons for this. The stubborn resistance of academic journals – with a few notable exceptions such as the British Medical Journal (BMJ) – to taking public involvement seriously is one. They could be doing more to require the authors of research papers to report on public involvement. But editors and editorial boards have proved to be a hard nut to crack. The sort of nut you get at Christmas where no kitchen utensil will suffice so you end up throwing it at the wall or reversing your car over it. Think Ice Age 1,2,3 all rolled into one – and the dinosaur inference is not too far from the truth.

It is also true that authors need better guidance on how they should be describing public involvement in their papers. Hence GRIPP2 (Guidance for Reporting Involvement of Patients and the Public) which was published yesterday in Research Involvement and Engagement. It builds on the original GRIPP checklist published in 2011 and follows a Delphi study with people to reach a consensus on the most important aspects of public involvement that should be reported.

Usefully, the authors – and I should declare an interest as one of the co-authors of the paper – have produced a long-form and short-form of the new GRIPP2 checklist. The long-form is for those studies where public involvement is the primary purpose. The short-form is for those studies where public involvement is a secondary focus. I’ve reproduced the short-form below.

GRIPP2 is going to be a useful tool, but we need academic journals to step up the plate in requiring authors to describe public involvement in their study – even if it is to acknowledge where it hasn’t happened and why – and for funders to set similar requirements on those they fund.  

This is not about putting a vice-like gripp of further requirements on researchers, it’s about enabling them to get a better grip on the next rung of the ladder from engagement to involvement.

And with the ongoing consultation on standards in public involvement as well, the bits of the jigsaw that will help them may be finally coming together. 

Note: for other reading you may wish to look at this blog by the Co-Editors in Chief of Research Involvement and Engagement, Sophie Staniszewska and Richard Stephens. Sophie is the lead author for GRIPP2. 

Table 2

GRIPP2 short form

1: Aim

Report the aim of PPI in the study

2: Methods

Provide a clear description of the methods used for PPI in the study

3: Study results

Outcomes—Report the results of PPI in the study, including both positive and negative outcomes

4: Discussion and conclusions

Outcomes—Comment on the extent to which PPI influenced the study overall. Describe positive and negative effects

5: Reflections/critical perspective

Comment critically on the study, reflecting on the things that went well and those that did not, so others can learn from this experience

PPI patient 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.

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.