BMJ

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.

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

This week saw a great editorial by Angela Coulter in the British Medical Journal (BMJ) headlined ‘Measuring what matters to patients.’  The underlying story may be summed up as follows.

The effectiveness of the care or medicines you and I receive every day has been decided by measuring the things that health professionals and researchers have decided are important. Some of these ‘measures’ or ‘outcomes’ are also important to patients and carers. But not always.

Often patients will have other measures of effectiveness which are completely ignored – such as fatigue. For instance a new medicine might make them so tired that they are unable to work or do things they need to such as be a parent.  The overall result is that it has a negative impact on their quality of life and of those around them.

Angela Coulter looks at the welcome initiative by health ministers from Organisation for Economic Co-operation and Development (OECD) countries so that patients and doctors are on the same page when thinking about the effectiveness of treatments and care.  Angela highlights a number of key priorities for this work.

A study published this week – this time in JAMA Oncology – emphasises just how important patients could be in bridging the knowledge gaps around treatment effectiveness. In the study, participants in a cancer trial were invited to self-report adverse events alongside adverse event reporting that would normally be the sole responsibility of the clinicians.

The study found that patients were willing and reliable reporters of these events. Also that they reported more events than clinicians. Essentially doctors would seem to be missing or under-reporting things that matter to patients.  The implication being that not only might patient reporting in this way enable a more complete assessment of treatments to be made but they might be an early warning mechanism for problems that would not otherwise be picked up by doctors.

In an age when every aspect of medicines development is under pressure to be more efficient in delivering effective treatments, the potential benefits to health, wealth and wellbeing in harnessing patient power should not be lost on politicians, policy-makers and health care leaders.

If you want to learn more about this subject then please take a look at the excellent COMET initiative which is doing some great work in this area.

Declaration: I am on the patient advisory panel for COMET and on the patient advisory group of the BMJ.

 

Its probably not the done thing for a National Director to applaud direct action.  So I won’t.

But I couldn’t help but warm to the recent appeal by Professor Luke Clements for carers to get in touch with their militant side.  Prof. Clements advised the parliamentary committee that looked at the Care Act.  In his recent talks around the country he’s been saying that the legislation does a great deal of good but essentially appeals to our aspirational side; rather than dealing with the nitty, gritty of what urgently needs to be done.

Half-way through Carers Awareness Week last week – and having listened to a host of very powerful carers stories – I did wonder whether we are letting people off the hook with a good and well-intentioned, but essentially cosmetic, tear in the eye or shallow platitude.

By constantly labelling carers ‘heroes’ do we inadvertently undermine their case by implying that they will go on whatever happens? Has the urgency of their struggle been whitewashed out with soft-focus public relations?  Have we made it easier for people to walk past our ‘heroes’ with the rallying but essentially patronising cry of:  ‘Keep caring, and carry on?’   When what we need to do is stop people in their tracks.

Aye, there’s the rub.

Organisations, systems, cultures, are all good at findings ways to accommodate and essentially smother the radical or the challenging until it becomes acceptable.  It’s no different in public involvement. The well-crafted advisory group with an isolated patient voice.  The agenda or conference programme with a patient on at the end (when everyone has gone home to get an early train).  Choosing to work  only with the corporate voice of patients – a charity CEO who is supposedly  ‘representative’ – rather than bringing a variety of voices together to reflect on their experience.  I think half the time, it’s not even a conscious decision.  And then again….

I try to tell the groups of researchers I speak to that public involvement is at its best when it is allowed the time and space to challenge what they are doing?  In the same way that they would expect their colleagues to challenge them.  And it is at its worst – in fact, worse than useless – when restricted, confined, expected to conform to their rules.  As someone once said at a recent conference I attended:  It must no longer be about how people should serve the system but how the system serves people.

A number of recent campaigns are about prising open some of the long-standing bastions of the science community, not least where and how it meets to talk about our health – yes, when I say ‘our’ I mean you and me.  Like Patients Included which is about ensuring patients are involved in the organisation and delivery of healthcare conferences.  Although I prefer the name of the more irreverent Patient Commando intiative in Canada which has a similar intent.  Creating space for the patient voice to be heard and to challenge.  Raiding the cultural norms around medical research and health care.

Now there’s a thought: ‘going commando.’  But then I know some people will think it’s all fur coat and knickers.

NIHR Journals Library Launch 20th June 2013

As promised here’s my speaking notes from the launch of the NIHR Journals Library today.  Good to see the Minister, Earl Howe, there (I tweeted his remarks earlier) plus the CMO, Professor Dame Sally Davies, Trish Edwards, Asst Editor from the BMJ etc.,

  • Public involvement in UK health research
  • NIHR wedded to public involvement as a core principle from the beginning
  • Six years have shaped and defined some common-sense models for involving the public
  • Have avoided something that could have been a ‘smothering cloak of acceptability’ instead are close to achieving a ‘partnership focused on improving value and quality.’ But lots still to do.
  • Quite literally thousands of patients, carers and others are joined in this endeavour with us (like Leicester yesterday!)
  • International leadership – lots of traffic with other countries about public involvement and sense that our developing partnership with the public might just be giving us an edge
  • NIHR Journals Library approach is a continuation of this agenda

What the NIHR Journals Library means for patients and the public

Open publication of the complete results….

  • Aside from demonstrating how public money has been spent and with what impact, a number key benefits, including one that you might not have thought of on your way here…..
    • Help patients, carers and relatives understand research, indeed the research underpinning care and treatment
    • We know people are increasingly looking for such information and trying to make sense of the mass of info already out there
    • Inform policy-makers and clinicians and support adoption of new and better treatments

Also about helping researchers and patients to better understand how different models of public involvement in research do or do not add value to…

  • Building the evidence base around methodology for public involvement
  • Important for other journals to begin to follow approach of NIHR Journals Library
  • Enabling sharing of knowledge and understanding

The NIHR Journals Library commitment to public involvement

  • A plain English summary will accompany all research published in the library
  • Authors will be asked to describe patient and public involvement in their study
  • Ref INVOLVE work to produce a standard approach to lay summaries across NIHR

From willing to informed research citizen

For selected projects we will also produce stand alone summaries intended for a public audience

One of tasks going forward it to embed public involvement in how the above pieces are produced.

This is just the beginning so watch this space….

 

 

 

 

I am prone to beating up our Royal Colleges for one reason or another.  But, over the last few years, I have grown to admire and respect the work of one of their number in particular – the Royal College of Paediatrics and Child Health (RCPCH).

Yesterday, RCPCH launched a new report entitled ‘Turning the Tide: Harnessing the Power of Child Health Research’ which is part progress report and part agenda for change.  The College’s campaign will aim to:

  • Debunk the myths surrounding clinical trials – and push for the introduction of a system of ‘opting out’ of  studies designed to reduce uncertainties in treatments, rather than ‘opting in’
  • Bring organisations together in a UK “Children’s Research Collaboration” to optimise use of funding for research and raise awareness of the need to strengthen children’s involvement
  • Improve education, research training, and guidance for paediatricians: with the RCPCH pledging to improve research training for all paediatricians  and clear routes into research careers
  • Strengthen the infrastructure for children’s biomedical research in the UK by supporting the establishment of a children’s trials network for non-medicines as well as medicines studies, and children’s health sciences networks to share resources, and promote cross-institutional collaboration between paediatricians, adult physicians, and non-clinical scientists researching the early life origins of adult diseases

There’s a very powerful section in the report about what the NHS should be doing which you could read across many, if not all, other conditions.

Two additional comments.  The idea of a UK Children’s Research Collaboration (UKCRC! funnily enough – see yesterday’s blog) is a good one.  Quite apart from the greater co-ordination of efforts that would result, precedent suggests it will also help amplify the message (one of the points Richard Smith noted in his BMJ blog today about charities needing to work together more).  The arguments in favour are given further force this afternoon by the news that donations to medical research charities are now falling (see AMRC blog).  Quite simply it is about efficiencies of scale.

I’m also delighted that RCPCH and its partners are going ahead with the idea of a ‘children’s charter.’  The College seem to have developed a strong public involvement model of working and I went to one of their meetings with young people and parents a few months ago as part of the ‘Turning the Tide’ preparation work.  This was an idea that came out of that meeting and I am pleased it has gained credence with the report authors including Neena Modi, Vice-President at the College.  In setting out children’s rights and expectations when it comes to research I am sure we would all wish to support and applaud its development.