public involvement impact

It doesn’t matter where you are in the world patients and carers have the same questions about research.

This week I am in Sydney, Australia, at the invitation of the Australia Dementia Forum hosted by the National Institute for Dementia Research.  It has been a fascinating two days. Most of all I have enjoyed meeting consumers (as they tend to be called here) – people with dementia and carers – and hearing their voices throughout the conference proceedings.

Yesterday I sat on a panel answering audience questions about the translation of research into practice. It’s a big issue in research generally. It’s a bugbear for patients, and carers – taxpayers – wherever I go. ‘Why don’t you do more to make sure that research findings are implemented and adopted?’ they ask. And well they might.

It just so happens that the National Institute for Health Research (NIHR) has announced an open competition to run what are being called ‘Applied Research Collaborations’ (NIHR ARCs) ‘for applied health and care research and to support implementation of research into practice, making tangible improvements for patients, the public and to health and care services.’ 

ARCs will follow on from where the current Collaborations for Applied Health Research and Care (CLAHRCs) leave off towards the end of 2019. They are good news from a public perspective ensuring a continued focus on implementation.

As I have  written before on this blog I have always been a big fan of the CLAHRCs and of the public involvement teams and communities that have coalesced around them. The public involvement work they have done since their inception as pilot organisations in 2008 has been of national if not international standing. Some of the innovations that have come out of them are exemplars of public involvement generally.

So I am delighted that the NIHR commitment to ARCs meants continuity of focus on the important theme of implementation. But what I am most pleased about is that the specification for the new the ARCs also embraces  the learning and priorities for patient and public involvement to emerge from the CLAHRC experience, the ‘Going the Extra Mile’ strategic review and NIHR wider strategy refresh. An increased focus on: diversity and inclusion; community-led research and new methods. As well as aligning things with the new PPI standards.

The following Q&A from the official documentation highlights the key differences between ARCs and CLAHRCs in terms of public involvement:

………The requirement to provide a strategy for public involvement,
engagement and participation remains unchanged from the NIHR
CLAHRC and other NIHR infrastructure schemes.

What’s different?
For NIHR ARCs, there is a greater emphasis on ‘community’ to ensure
that their plans reflect the diversity of the local population, foster
community-led approaches to research, as well as developing new
methods and approaches to public and community involvement,
engagement and participation. NIHR ARCs will also be expected to
consider the six national standards for public involvement in research,
which were published in 2018…….


These are important strategic signals which the public involvement community needs to embrace as opportunities to take things to a new level; as a chance to bring new thinking and approaches to bear upon some perennial issues.


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.

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.




One of the things I feel incredibly fortunate about in doing my role is that people send me all sorts of interesting papers, articles, videos and other stuff.  I do get round to looking at them all, although it can take me a bit of time.

More often than not something will bubble to the surface quicker than the rest.  This might be because of its topicality, its wider relevance or simply that it has been brilliantly executed and is highly accessible.

This paper – Involving Service Users with Intellectual Disability in Research: Experiences from the STOP Diabetes Study – just published in the Journal of Policy and Practice in Intellectual Disabilities, seems to hit all these buttons and more.

It’s an almost forensic but nonetheless easy-to-read examination of the research team’s approach to public involvement in this important study.  Each aspect of the way in which people with intellectual disabilities are involved is looked at in some detail – from study publicity to the training of staff.

In what I think is a refreshingly honest and candid conclusion the authors then posit some recommendations that we would all do well to heed: the need to involve people early in the development of a research study; the importance of addressing practical barriers to involvement – from research setting to facilitation;  dealing with the pain of payment issues; the benefits of casting your net wide for people to involve; the fact that public involvement is an on-going activity not a smash and grab raid on people’s expertise and insight.

For me there’s a message running through this paper that with due care, proper planning and assiduous attention to the task, there is no such thing as a ‘hard to reach’ audience, only marginalised groups that we have excused ourselves from working with for far too long. A subtle but important difference.

The approach to public involvement in this study was by no means perfect – as the authors admit.  But the paper is all the more compelling and helpful for this reason. Anyway, what is perfect PPI?  I’ve yet to see it and would be suspicious if someone claimed to be doing it.





I am often asked whether it is difficult – if not impossible – to involve the public in laboratory based research where researchers have limited or no direct contact with patients and the public.

My answer is that it might be difficult but it can be done. And the benefits can be significant.  The real challenges are to be clear about the purpose of this involvement, to identify where it can make a difference, and to identify the right methods for making it work in practice.

Earlier this year I sat on an EU funding panel in the neurosciences.  We looked at a wide variety of applications – from public health to basic science in a laboratory.  It was striking to me that the basic scientists  often put together more exciting and imaginative public involvement plans than their colleagues in other fields who should’ve known better. It was as if they were rising to the challenge; they wanted to prove those wrong who say that the lab is no place for the public.

I seem to recall that, for some years, the MS Society ran a buddy scheme in which MS sufferers were teamed-up with lab-based researchers. The partnership they developed over time became a motivational force for the researchers who had often never met a person with MS before. Equally the people with MS felt empowered by the knowledge and understanding they gained. They became impressive ambassadors for the charity’s research work.

I am delighted to say that a little known but very important group in the world of public involvement – the ‘User Involvement in Voluntary Organisations – Shared Learning Group’ (which brings together charities and voluntary organisation pioneering public involvement work) – has published a short but rather brilliant discussion paper looking at ways in which patients and the public can be involved in lab-based research.

You can find the paper here (see link entitled ‘Involving people in laboratory-based research). It includes examples from the Alzheimer’s Society, Cancer Research UK and Parkinson’s UK, some really helpful guidelines to aide your thinking as well as links to further reading.

I highly recommend it.