public involvement

If you haven’t read Elspeth Mathie (@elspeth_mathie) and colleagues’ excellent paper ‘Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study’  in Health Expectations then I highly recommend a read over the next few days.  

Their small but significant study  – which was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England – is based on a survey of, and interviews with, public contributors and researchers. It shines a spotlight on the whole issue of feedback; the lack of which has been a source of some irritation for the public involvement community for many years.

 

For me the most striking thing about the paper is not so much its headline figures reporting that, while receiving feedback is important to the vast majority of contributors (82%), 19% had received none at all. Shameful though this is.  Or the fact that when feedback does happen it can take many different forms. Equally we should not be surprised that there are many different ways of giving feedback and a number of factors that can get in its war – from time, to changes in personnel to mention just two.

No, for me, the interesting thing to emerge from the interviews conducted in the study is that while some researchers saw feedback as a matter of courtesy (true), public contributors viewed it as an opportunity to learn and improve. Implicit in this is a sense that perhaps some researchers still feel they ‘have to’ do ‘PPI’ rather than see it as a valuable part of their work.  Perhaps the good news is that the experience of giving and receiving feedback seems to improve as researchers and contributors got older and wiser.

Perhaps the other key message that I have taken away with me is a reminder of the need to think about feedback at the start, rather than at the end, of a research project. For by the end it is all too late.  People are exhausted and want to move on. Deciding with public contributors at the very beginning of the project what you want to feed back, why and how you are going to use the information gained is extremely important.

As highlighted in the rather brilliant new ‘Guidance for Researcher: Feedback’ published by Elspeth Mathie and the team at the Centre for Research in Public Health and Community Care with the support of the East of England NIHR Research Design Services (RDS) organisation which I also highly recommend.

One final note. A commitment to give feedback and learn from it is a sign of a healthy team culture. As with many other things to do with team culture the tone and style is set at the top. Feedback is therefore one of those things that we should hold Chief Investigators and Principal Investigators accountable for.

Have a great weekend.

Oh, and feedback on the blog is always welcome. Thanks.

 

 

 

 

 

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.

It was all going so well.

My fears of spending eight hours on a budget airline from Ottawa to Nice were quickly subsiding.

The plane was half-full. No one was sitting next to me. I could spread my things out. More importantly I could get to the loo at will. Most of my fellow passengers seemed to be smiling, well-behaved, holidaying septuagenarians and octogenarians on their way to the South of France. Even the plane seemed in pretty good shape as we climbed out of Canadian airspace. Which is always a good sign.

Then the flight attendants brought out tablets. No, not a trolley load of medicines. But mini-iPads.

On this particular airline, in-flight entertainment consisted of everyone being given a mini-iPad for the duration of the flight on which they could play films, tv shows and music. Normally in-flight entertainment causes a plane full of passengers to settle into a quasi-like trance – well, that and the food and drink. However, the introduction of state-of-the-art technology did not go down well with this group of airborne senior Canadian citizens; and being in a (highly) pressurised environment 30,000ft above the ocean did not help. What unfolded was nothing short of digital pandemonium.

For the first 30 minutes or so the cabin echoed to the sound of a succession of tablets failing to the floor as people tried to fix their tablets to the back of the seat in front of then. Then, as people tried to master the subtleties of touch-screen technology there followed increasingly frustrated and desparate cries of ‘Where did it go?’, ‘How do you..?’ and ‘How did I do that? I don’t know how I did that? Jean. Jean!’

Chosen films swished off the screen into the ether. Other things – ‘strange things’ – appeared on screen from nowhere.  Flight attendant call-buttons pinged non-stop as if there was a pin-ball machine at the back of the aircraft. The young stewardesses criss-crossed the cabin trying to serve food with one hand and carry out IT tutorials with the other. They raised their eyebrows. The smiles of my nice ‘genarians’ were replaced by scowls. Before long most had taken to reading a book or snoozing instead.

Ensconced in my seat I weighed up the pros and cons of turning facilitator, mid-Atlantic.  Of conducting an impromptu workshop to take people through the basic functions of these infernal machines that were spoiling their customer experience. After all, it was a captive audience if you get my meaning. But I thought better of it. I also pondered whether Air Canada Rouge might have thought about including an iPad ‘briefing’ to follow the safety briefing that we have all become used to. Something along the lines of ‘If for some reason the iPad fails….’

I told a few friends this story and it was also uppermost in my mind as I sat in the audience at last week’s Ann Sowerby eHealth Symposium organised by Imperial College Health Partners. I could only attend a few of the panel sessions. These were excellent. More pragmatic and grounded than the evangelist Twitter headlines coming from the conference before I arrived. Things like: ‘Digital is the only game in town when it comes to health system transformation.’

(Let’s hope not, is all I can say.)

Or the one that really gets to me which is when people talk about a ‘Paperless NHS.’  As if paper is the enemy.

The first time I heard someone make this an aim for their organisation was in 1995. I have it written in a work diary. 22 years later this organisation still uses a heck of a lot of paper. Not because they are bad at being digital – quite the contrary. No, because as a goal it is wrong. I think what they really meant then and now is they want to use digital technology to improve, to become more efficient. As the Wachter Review of NHS technology said: 

“We believe that the target of ‘paperless by 2020’ should be discarded as unrealistic. The goal is not paperless – it is improvement, facilitated by having information where it’s needed, when it’s needed.”

I love the vision and ambition that lies behind ‘evandigitalism’ as I like to call it.  Truly I do. No one is a bigger fan of digital than I. But unless we adopt a healthy pragmatism, unless we are grounded in our approach to applying and adopting digital technology, we will cause more problems than solutions for those we want to help. This was certainly the case for my Canadian friends. For them it meant being given only one choice, no help, a poor user experience and less value for money.

This morning I thought Derek Stewart wrote an important blog with some good questions we should ask ourselves when thinking about digital in health research: principled pragmatism which puts an understanding of the context within which digital will operate at its heart.

Funnily enough I was on another flight a few days ago. This time to Spain. I noticed that Tim Harford, the Financial Times journalist and presenter of the BBC series ‘Fifty Things That Made the Modern Economy’ has an article in the British Airways Business Life Magazine about what history can tell us about the future of technology. In the article he reminds us that the discovery of paper was a bigger invention than that of the printing press because of its cheapness and the ease with which it can be produced at scale.  He finishes his article by saying:

‘I am as clueless about the future of technology as anyone – but I’ve learnt three lessons by looking at its past. One: don’t be dazzled by the fancy stuff. Two: humble inventions can change the world if they are cheap enough. Three: always ask: ‘To use this invention well, what else needs to change.’

Let’s stop playing ‘Paper, scissors, ipad’ in digital health, for the patient’s sake.

Doors to manual.

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.