‘Ed Talk: Patients as Co-authors of Care #PPFEd16 @RCPEdin

Here’s the text of my lecture today at the Royal College of Physicians of Edinburgh Past, Present and Future of Medicine Conference. Great to share the stage with writer and broadcaster Sally Magnusson. Please check out her charity ‘Playlist for Life.’ Plus her book – ‘Where Memories Go: Why Dementia Changes Everything’ which I have just started.

At some point I shall add the slides…and a few edits I made along the way.

Tuesday 13th September 2016

Key Note Lecture: ‘Patients as Co-authors of Care’

Ladies and Gentlemen, it is my privilege and honour to have been asked to join Sally Magnusson this afternoon to give this final key note lecture to what has been an inspiring and though-provoking conference. I hope that together we can provide you with a fitting end to a fine event for which the College and its sponsors should be congratulated.

I am acutely aware that I am sharing the platform with a successful writer and journalist in Sally. But I hope she will not mind me stealing the tools of her trade by trying to deal with this afternoon’s topic as a story composed of those five elements that are key to any story – plot, setting, character, conflict and resolution. And where better to start this tale than with the weather, an obsession on these isles.

As I am sure many of you in this room will know, interest in how the weather affects people’s health goes back to the time of Hippocrates – the father of modern medicine. From a patient perspective, the weather can have a significant impact on the ability to cope with illness and on your quality of life.

For many years people with arthritis have told their doctor that the pain and fatigue symptoms associated with their condition have become worse or better with changes in the weather. For many years it has felt to them that this lived experience has, at worst, been dismissed and, at best, ignored.

Thankfully, a research team at the University of Manchester led by Professor Will Dixon did take note. Earlier this year, they launched a mass participation study via a website and an ‘app’ entitled ‘cloudywithachanceofpain’ which uses smartphone technology to enable people to track their symptoms while automatically recording the weather at their location.

[Slide 2]

9000 people with long-term pain symptoms have already taken part in the project and, as you may have seen in the media, last week the team released some interim data from the first nine months. Looking specifically at data collected from participants in three cities – Leeds, Norwich and London – they found that as the number of sunny days increased from February to April, the amount of time spent in severe pain decreased. But that the amount of time spent in severe pain increased again in June when the weather was wetter and there were fewer hours of sunshine.

If proven it is this sort of finding that might help people plan daily activities better and self-manage their condition more effectively. It will allow medical researchers to explore new medicines and treatments.

[Slide 3]

I chose to open my talk today with this example because it’s this sort of work and the way it has been done that fills me with optimism about how medicine might evolve in the future to meet the health and care challenges we face across the world.

The way that patients, carers, health professionals and researchers have come together to work in partnership; the use of data – and the technology upon which it sits – in such an open, imaginative and tactile way; but most of all because it is tackling a question that really matters to people and their everyday experience with a chronic condition. For if patients are to be co-authors of their care – the title of this session – then that means being empowered and enabled to shape their own story and surely that must begin with helping to determine the priorities for research that will underpin the treatments, therapies and care of the future.

Sir Iain Chalmers – who opened the conference yesterday with Sir Muir Gray – has drawn much attention to the different priorities that patients, carers and health professionals have for research versus those that are pursued by research funders.

[Slide 4]

James Lind Alliance Priority Setting Partnerships – a methodology developed by Sir Iain, patient leaders and senior doctors ten years ago – are an increasingly common way in the UK and abroad by which patients, carers and health professionals are now coming together to identify their priorities. These have shown marked differences between the proportions of different types of treatments proposed by patients, carers and clinicians and those currently being evaluated by researchers.

As a paper in Research Involvement and Engagement by Sir Iain, Sally Crowe, Mark Fenton, Matthew Hall and Katherine Cowan in June last year showed drugs accounted for only 18 % (23/126) of the treatments mentioned in these priority setting exercises priorities; in registered non-commercial trials, drugs accounted for 37 % (397/1069) of the treatments mentioned; and in registered commercial trials, drugs accounted for 86 % (689/798) of the treatments mentioned.

Greater public involvement will also help us think more carefully about the settings in which medicine is practiced and to enable us to do this ever more effectively in people’s own homes. It is still common for us to talk in medicine and health research in terms of ‘bench to bedside.’ But I wonder whether we ought now to be talking more in terms of ‘bench to fireside’ or even, with the advent of mobiles, wearable and other technologies, ‘bench to on my side’ to reflect this concern and the way that people lead their lives.

[Slide 5]

The recent James Lind Alliance Priority Setting in Partnership in palliative care which involved 1400 current and former carers, health and social care professionals identified the top priority for people as finding the best way to provide care outside of working hours – from symptom management to GP visits and 24 hour support for patients, carers and families – to avoid crises and help loved-ones remain in their place of choice. But unfortunately as work by Marie Curie Care shows, most of do not live out our final days where we would like to.

[Slide 6]

The relationships patients have with those around them – their loved-ones, their doctor and an increasing array of other health and social professionals – is fundamental to how their story will unfold. But it is their relationship with their doctor that will often matter most. Much work has been done in the UK and abroad to develop the idea of shared decision-making between patients and doctor. However, many patients remain sceptical about how close we are to seeing medicine fully embrace the values and principles of shared decision-making. This in spite of some great projects such as MAGIC by the Health Foundation that have demonstrated how it can be put into practice even in a time-short and cash-strapped NHS.

[Slide 7 – definition of shared decision-making]

A colleague of mine – an outstanding patient advocate who suffers from Type 1 Diabetes – described to me how frustrating this could be from a patient perspective and actually undermining of good medicine. In her instance, in spite of her expertise in her own illness, the recommendations of her specialist and that of the National Institute for Health and Care Excellence – her doctor has stubbornly resisted prescribing her with the blood glucose drips she needs.

The fact is that we still do not provide patients or doctors with the right tools, learning and support to enable them to have these conversations or to know what to do when they do not go well. A parent of an eleven-year old child with cystic fibrosis spoke movingly about this at a national conference I attended last week.  She was strong in her assertion that it was not just information her family needed but the skills and help to enable them to talk with their doctor with confidence – or information plus!

She recognised that this conversation was constantly evolving over time to deal with changes in their child’s condition, the needs arising from this not to mention the fact their child’s voice was growing in prominence in this dialogue. It is not that such tools do not exist. Very often they do. The frustration is that we seem unable to put them in people’s hands.

The additional challenge we face is that this doctor/patient conversation is not as private as it once was. Many influences – the press, social media, patient groups, peer pressure to name but a few – now bear down if not actively intruding upon it. Much of this was inconceivable only ten years ago.

Nowhere is this private tension/public debate between science, medicine and the public more evidence than in the way society deals with evidence. If you have landed on these shores over the past week then I suspect you will have noticed the fervent debate that has been going on here about the risks and benefits of statins.

This tweet from BBC Radio 2’s Jeremy Vine bluntly summarises how the debate has gone thus far.

It feels that science and medicine are struggling to come to terms with how best to manage such debates. Ever-stronger statements about the supremacy of scientific evidence will no longer do – particular when it is contested. We need to be more creative in helping people understand the evidence and its relevance to them while also acknowledging the value of people’s experience in helping us improve treatment and care.  People need to be able to look at both and feel they can make the right decisions for themselves with their doctor.

[Medication passport]

This medication passport – which is available online and in hard copy form – was conceived by and co-designed with patients, carers and the public in North West London. Funded by the NWL NIHR Collaboration for Applied Health Research and Care – it deals with another issue that people have with medicines. Namely keeping track of the changes in prescription and dosage and acts as a mutually shared record for patient and doctor to keep and minimise the risk of mistakes or errors. But I use it to demonstrate that, when asked, patients and carers are resourceful and creative in thinking up solutions to problems that may be baffling their professional colleagues.

The Academy of Medical Sciences has been asked to look at this question of how society uses evidence and I very much hope that the working group – of which I am part – can formulate a report and recommendations which will lead us on a path to this aim.

Where does this story ultimately end? What is its resolution.

Well, perhaps we should really be thinking of a series of interlinked stories rather than one long tale. That certainly seems to be the message from the narrative medicine school of thought which is receiving greater prominence these days. I certainly hope the lessons learnt in one – and you are shortly about to hear another from Sally – can be shared and passed on to the next to improve the story all the time.  More importantly, I hope that I have convinced you that the patient is fundamental to how the story for medicine unfolds from this point forwards.

To finish I am tempted to twist a Ray Bradbury quote on the art of story-telling and say:

‘First, find out what your patient wants, then just follow them.’

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