public involvement in health research

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.

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.

 

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.

 

 

Herewith a copy of the announcement that you will also find on the National Institute for Health Research (NIHR) and INVOLVE websites to day about the award of the new INVOLVE contract.  This means INVOLVE now enters its second decade of being fully funded by the NIHR and the only such body of its kind across the world.  An incredible achievement. But what this announcement says is that no one is resting on their laurels.  It is time to build on the great work that INVOLVE has already done and for it to work with its many partners so that one day public involvement is second nature in everything that the NIHR and its people does.

Formal announcement as follows:

13 August 2015

The University of Southampton has been awarded a four year contract worth £3.2 million to deliver the NIHR’s Centre for Patient and Public Involvement, Participation and Engagement, taking account of the Going the Extra Mile report.

To date, INVOLVE has delivered knowledge, guidance and support that is highly respected and of immense value to the public and researchers alike. It has established an international reputation for excellence and leadership in public involvement in research.

Based in the Wessex Institute at the University of Southampton the new contract will start on 1 February 2016. INVOLVE will build on its strong foundations of providing support and expertise whilst evolving the way it delivers it services. Through a new partnership with the NIHR Research Design Service, INVOLVE will provide leadership in public involvement in research at national, local and regional levels.

Professor Dame Sally C. Davies FRS FMedSci , Chief Medical Officer and Chief Scientific Adviser at the Department of Health said:

“INVOLVE represents our core values, with patients and the public being at the heart of everything that we do . This new contract will provide continuity for the superb work already underway, with new and greatly improved links to the regional and local expertise of the NIHR Research Design Service and across the NIHR.”

Simon Denegri, Chair of INVOLVE said:

“This is great news for the public and for research. The ‘Going the Extra Mile’ report underlined that, as the NIHR community of patients, carers and the public grows, we must work differently to better support their contribution to research. The Wessex Institute will provide a strong foundation for the work of INVOLVE, enabling it to build upon its success while ensuring it continues to innovate and think strategically about advancing public involvement across the NIHR. The partnership with the NIHR’s Research Design Service means we can strengthen the practical support and advice available to colleagues locally, and better assure its quality. I am excited about these new arrangements and look forward to judging their success on whether they have resulted in a stronger patient voice in NIHR research in five years’ time.”

The announcement of the INVOLVE Centre contract comes a few months after the publication of the ‘Going the Extra Mile’ report and recommendations following a year-long strategic review of public involvement across the NIHR. The review panel welcomed the NIHR’s on-going commitment to supporting INVOLVE over the last ten years. It also provided expert input into how INVOLVE might be remodelled for the future so that it continued to meet the needs of the public, researchers and other partners in a rapidly changing health research system.

Click here for more information about INVOLVE http://www.nihr.ac.uk/about/involve.htm

You’d think that Aintree Racecourse, home of the Grand National, would be the perfect venue at which to dwell on the barriers to how we involve the public in research. What with ‘Bechers Brook’ and ‘The Chair,’ fences over which horses and riders stumble and tumble every year. It would only be right to follow suit, would it not?

Not if you are the North West People in Research Forum (NIPiRF) it’s not!  Such is the positivity that oozes through their veins, they would never allow us such self indulgence.  No, they would support us to find ways of jumping those fences – together.  As they did yesterday, at their ‘open space’ (I wish every meeting was run like ‘Open Space.’) catalyst event focusing on the question of: ‘How can we demonstrate the benefits of public involvement in research?’

It was my task to begin yesterday’s event with what they call a ‘provocation.’  Just to get people going.  So I chose to share some personal thoughts on the issue of evidence in public involvement. These are my main points:

In the forthcoming report of the Breaking Boundaries review, one of the six common goals that is advocated for public involvement across NIHR is: ‘Evidence of what works should be accessible to others so that they can put it into practice.’  The perceived lack of evidence about the impact of public involvement on research has been used as an argument against us for too long.  It is now a red herring in my view.  We do have the evidence.  However, we have not been good at gathering it and serving it up in ways that are helpful and persuasive to others.

It is in all our interests to grow this evidence.  For me we need to show how public involvement – or, more importantly, the knowledge that patients and the public have gained through their experiences, is making a difference to: the quality of research; the quality of research new treatments and interventions; the quality of the knowledge available to others and; most importantly, the quality of theirs and other people’s lives.

We need to think more creatively about the presentation of this evidence.  But what does this look like? Different audiences will need different sorts of evidence.  At the very least they will need evidence presented in a variety of ways: words, pictures, numbers, social media, acadmic papers etc.,  How about this for instance.

We need to be careful not to create a hierarchy of evidence in which the paper published in an academic paper is regarded as the gold standard of evidence and all other types of evidence are dismissed.  We must never doubt the power of the well-crafted and well-told patient story in moving an audience in a conference room, a newspaper or even a text book.  And we should celebrate those who are embracing a spirit of co-production to produce and showcase these stories.

Nor must we inadvertently encourage the professionalism of evidence creation such that the patient’s voice is taken away from them and then manipulated by others.  We should support patients and the public – and, indeed, researchers and clinicians as well –  to ‘reclaim their story’ in public involvement and drive a harder bargain about how it is told, by whom, to whom.

It is important for us to respect the role and importance of evidence in helping us promote and advance public involvement. And yet, wouldn’t it be terrible if we lost the art of knowing a good idea when we saw it and having the confidence to run with it?  That takes judgement, a quality that seems ill-thought of these days and certainly not well taught.

Finally, I hope that people will not just think about their own story but also about the story that they wish to tell with others.  We are stronger when working together. We are louder when reading from the same script – co-produced of course!

What story are you going to tell in 2015?