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.

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.

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.


Is it me or is 2016 ‘full-on’ or what? It is as if someone has put something in our water supply. It’s nearly February already.

My good colleagues in public involvement are hitting the sort of productivity levels last seen in a Japanese car factory in the 1990s. Yesterday I blogged about two new ‘manuals’ from Parkinson’s UK and EUPATI. Today it’s the turn of young people.

INVOLVE – which is going through some considerable changes right now – still manages to push out the best of the best. It has launched two new resources here. ‘A top tips for involving children and young people in research – as rated by young people themselves.’ And a longer document looking at key issues and providing links to other resources.

I’m also chuffed to be a co-author on this article that appeared in the BMJ Open ‘Education and Practice’ this week.  This also has top-tips in it!

I notice that the highly underrated Patient Information Forum have also this week produced a free, new downloadable guide to producing health information for (and with I hope!?) children and young people. You can find it here.

Finally a shout out for this meeting taking place in Brixton for young people interested in mental health research.  The event is being organised by the Service User Research Enterprise (SURE) for the afternoon of Saturday 13th February and it looks brilliant.  Poster below – just to cheer up my site.

Young people, your time has come!





I didn’t think so.

Do you get those nagging calls about PPI? It’s usually early evening. Sometimes it is a recorded voice message. Sometimes a text. Very occasionally it is a real person from the unreal environment of a call centre. Unfortunately they are all contacting me about that other PPI – yes, Payment Protection Insurance. Those financiers and bankers really stole our thunder didn’t they when they called it PPI? (By the way you should go and see ‘The Big Short’ if you haven’t already).

Sorry, I digress.

If only, if only, we had a legion of sales people ringing innocent victims around the country to tell them about public involvement in research; to offer them the latest products which will make their day brighter and easier. At bargain prices and in any shape, size or colour that fitted them best.

Particularly to sell the message to researchers – cash-strapped, time short, expected to do more with less, downtrodden. Hang on, they sound just like patients and the public. Perhaps they are, secretly, when they are at home and no one is looking.

Fact is that we have lots of volunteers who do this round-the-clock. But we just don’t have phones for them and sometimes the products they need. But this week, two ‘how to’ guides have emerged that I think will be great additions to our stock.

The first – and I truly love this one – is a new guidebook to patient and public by Parkinson’s UK: ‘Patients and Public Involvement: A Resource for Researchers.’ It’s beautifully presented and a pleasure to read with lots of great advice. Parkinson’s UK is proof positive that you can go from being an organisation that is average in public involvement to being an exemplar. It just takes will and dedicated people with smart ideas.

I once rather flippantly referred to EUPATI as sounding like a dish you order from a take-away. But here’s one take-away from them you won’t regret (is it me or am I sounding more and more like a judge off Strictly Come Dancing). The European Patients Academy have launched their long awaited toolbox on medicines development that looks at every aspect of this activity including public involvement. A quick look suggests it is comprehensive and will be a rich and vibrant source of information. I particularly like the access to lots of current articles. Good job EUPATI.

A Happy New Year to you all.  Here’s to your very good health and much happiness in 2016.

I am no futurologist so my predictions for public involvement in health research over the next 12 months should be taken with a pinch of salt.

However, I do know one thing.  The appointment of the new Director of INVOLVE is going to be one of the most important in UK public involvement for some time.

It’s an exciting opportunity to build on the incredible work of the outgoing Director, Sarah Buckland, and her team over the last decade or more; to steer INVOLVE so that public involvement becomes a permanent feature of how research excellence is defined in the NIHR; to extend its influence nationally and internationally.  You also get to work with me and what’s not to like about that? 🙂

The job advert appeared on the University of Southampton just before Christmas and can be found here.  The closing date for applications is 18th January 2016.

Good luck to you if you choose to apply.  Otherwise, please pass this on to someone who you think might be interested.

Looking forward to working with you all.



[Aside] Though this be madness, yet there is method in’t.

Hamlet Act 2, scene 2, 193–206

If you are in some way connected to public involvement in health research then you get used to ‘the look.’

Sometimes it’s a vacant stare or a gaze falling slowly across the face like the sun going down.  In other instances it’s a look of panic or sheer terror.  ‘Are you mad?’ you can see them think.  Then, ‘No, they’re serious and my world is about to be turned upside down.’  This, as they shift their weight from foot to foot.

Demonstrating the logic and rationale behind our passion is key to influencing these panic-stricken colleagues who have stumbled across our world for the first time.  Identifying methods and methodology that will not just work for them but make research better and their lives easier is key.  Refinement of this thinking and in ways that can be easily assimilated is one of the three grand challenges for public involvement.

It is my personal opinion that we are not doing nearly enough across the NIHR to learn from current public involvement practices, develop appropriate methods and methodology and then serve these up in a way which can be used easily by our friends colleagues.  INVOLVE has done some fabulous work in this area not least through its invoNET programme of work and its evidence library.  But others need to begin to demonstrate that they will be taking this agenda seriously if we are not to build public involvement on foundations of sand. Across the water, in Canada

The Health Services and Delivery Research Programme is currently on the hunt for future research topics (deadline, 4th December) and this may well be one route to boost efforts.  In the meantime there are some studies underway which I hope people will support.

To this end, I am passing on this invitation to take part in the Medical Research Council (MRC) -funded METHODICAL study – initially, a two-round survey to help agree which methods, practices and procedures of patient and public involvement (PPI) in clinical trials should be prioritised for future research…

The notice I received says..

We are looking for people with at least 12 months experience of PPI in clinical trials within any of the following roles:

  • PPI Researchers (e.g. those who conduct research into PPI in clinical trials and authors of guidance documents)
  • Non-lay Reviewers of trials (e.g. professional members of clinical trial funding boards /Research ethics committees)
  • Lay Reviewers (e.g. members of the public sitting on clinical trial funding boards/ Research ethics committees)
  • PPI Advisors across trials (e.g. member of Research Design Service (RDS) advising others on PPI activity, PPI advisors from funding bodies)
  • PPI Contributors (e.g. patient representatives, research partners in clinical trials)
  • PPI Co-ordinators (e.g. working for a Clinical Trial Unit (CTU) or research network to coordinate PPI activity)
  • Chief Investigators, trial managers and other researchers/staff who plan/oversee PPI in trials

Each round of the online survey will take about 15-20 minutes. Round one involves scoring the importance of a list of research topics on a scale of 1-9. About two months later you will be invited to complete round two, where you will be asked to review a summary of the survey responses and given the option to change or keep your original scores.

This type of survey is called a Delphi, and is a way of finding agreement amongst a group of people. To ensure the results are accurate it is important that as many people as possible complete both rounds of the survey.

Round one will be available to complete until Friday 11th December.

Some people who complete the two-round survey will be invited to a meeting in Liverpool, at which the results will be presented and discussed to achieve a final agreement of the research priorities. You do not need to be willing to attend this in order to complete the online survey.

More detailed information about the study is available in the attached document.

The survey can be accessed from

We would appreciate your help with the study. Also, if you think there are any persons or networks that this might be relevant to we would appreciate your help with the dissemination of this email.