When Elephants Fight: How patient engagement could help the Junior Doctor dispute

By David Gilbert, Director, InHealth Associates and Jeremy Taylor, Chief Executive, National Voices

This article first appeared in the Health Service Journal online, 15th January 2016

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“When elephants fight, the grass gets trampled”. African Proverb.

The junior doctors’ strike is all about us – the patients. It’s about what constitutes a safe and effective health service for us. It’s about how long doctors should work for and with us through the week and at weekends – and for what reward.

It’s about how to organise a 7 day NHS where my chances of survival don’t depend on what day of the week I fall ill. It’s about whether the status quo is safe enough and whether the government’s alternative to the status quo is safe enough. It’s so about us.

Both sides to the current dispute ground their argument in what is important to patients. The government says it wants a new contract for junior doctors to improve patient safety. The BMA rejects the new contract on the grounds that it doesn’t provide enough safeguards for doctors – and patients.

As central players in this dispute, patients have, of course, been very closely involved in all the negotiations as per the rhetoric of ‘no decision about me without me’.

Wise Heads

We have been engaged with, and consulted by, both sides from the start about the critical components of a 7 day NHS and contributed detailed insight and evidence about the experience of inpatients at weekends. We have helped frame the negotiating mandates of both parties. Wise heads from the patient world have exerted an important moderating influence at the negotiating table. What? No, of course we made all that up. The fact is patients have had no voice at all in this dispute.

There is nothing new in this, sadly. Patient and public involvement is now part of the orthodoxy, at least in theory. There are admirable examples where it has been embraced in practice, for example the recent reviews of cancer and mental health. But there are areas of policy and decision making where it just doesn’t apply. It didn’t apply in Andrew Lansley’s car-crash reorganization of the NHS. It didn’t apply in the care.data fiasco. It didn’t apply to the government’s latest “mandate” to NHS England. And especially it doesn’t apply in negotiations of any kind.

In the current dispute, the BMA fancies it can speak on behalf of patients while The Secretary of State sees himself as the champion of patients. But actual patients don’t feature. Isn’t it time for a different approach?

Had patients been involved earlier, the content of the new contract might have been different and the process might have gone better. The benefits of having patients as partners include reframing the problem so as to ensure the focus is truly on what matters to patients, generating a richer menu of potential solutions, shifting power dynamics so as to model trusting relationships and changing practice.

The history of the NHS decision making is one of a tribal battle between clinical and managerial/policy interests claiming to be the ‘voice’ for patients. But while paternalism is shifting at clinical level – witness the rise of self-management and shared-decision making – political power remains in the hands of the few.

So, why do we have a so-called patient-centred NHS that excludes patients?

A new dialogue

It is high time for a tri-partite vision of healthcare leadership, one in which clinical, managerial and patient leaders bring their own truths to the table, where we model the very relationships in policy that are so crucial to patient-centred healthcare in the consultation rooms.

This is a model that could help usher in a new era of dialogue. But a system that is predicated on a binary ‘us and them’ approach and that excludes patients, carers and citizens is bound to create polarisation. A two-legged stool falls over.

Prevention of the current dispute is better than cure – patients could have helped avoid this situation in our view. And, whatever your opinion on the rights and wrongs of the dispute, no-one is arguing that it has been well handled. On the contrary it has been very confrontational.

The BMA has appeared to many as obstinate. And it was surely a mistake for the Secretary of State to lead the employer side (a mistake implicitly acknowledged in the decision to hand over this role to Sir David Dalton).

So, Sir David, there is now an opportunity for some fresh beginnings. How about patients at the negotiating table this time? Otherwise we may be need to dig in for a long battle…

David Gilbert, Director, InHealth Associates
http://www.inhealthassociates.co.uk

Jeremy Taylor, Chief Executive, National Voices
http://www.nationalvoices.org.uk/

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Patients and Data: Changing roles and relationships

Article by David Gilbert and Mark Doughty, October 2014

“And don’t criticize
What you can’t understand
Your sons and your daughters
Are beyond your command”

(Bob Dylan, The Times They Are A-Changin’)

Data and changes in roles and relationships

We live in a world awash with data. From decisions about the unit price per sheet of toilet paper, to price plans for smart phones, every day we navigate through a data and information minefield. Whatever one’s attitude – whether you welcome more data, or feel threatened by it, the data-age is here to stay. And it is changing our relationship to services.

In healthcare, the availability of more data can help change the role of patients vis-a-vis relationships with health professionals. A friend researched the risks and benefits of various treatments, which hospital delivered best quality care and which surgeon she could trust. She made those decisions alongside her loved ones and general practitioner (GP). Another with a long term condition said granting his trust to a GP is based on professional willingness to share and discuss data honestly and in the context of his life and values. Patients becoming knowledgeable about data make healthcare more of an equal relationship – or it should do.

The wide availability of data is also enabling patients, users, and carers to change their relationships with each other. Peer-to-peer support, a growing phenomenon both on-and off-line is about people sharing their own ‘data’, derived from their own sense of what works, their own lives, and their own healthcare experiences. Meanwhile, people having access to their own medical records is becoming part of mainstream healthcare – changing relationships between patients and the health system and enabling professionals and patients to have different sorts of conversations − though not without a fight from some professionals who still regard themselves as data custodians.

With the advent of digital technologies, patients are generating and using their own personal data, effectively changing intrapersonal relationships (i.e. with themselves). The world of the ‘quantified self’ reveals a world of people using wearable devices to provide feedback on physiological processes so as to be more in control of the way they live and behave.

From individual decision-making to strategic decision-making

More widely available data is changing patient and professional roles and relationships at a micro-level, but not yet at the macro-level. If we are being ‘trusted’ and encouraged to make choices at an individual level, surely we have the right to be part of decisions on the way data is being generated and used.

In terms of clinical data information, much of it is still secret. Think Enron or GSK in India or, any number of multi-national scandals. The UK government promotes the benefits of allowing corporate interests and researchers access to data held about patients by GPs, but has not involved patients or patient groups in the development of that policy. While more people use wearable devices and share data online, they have little say in how that data is used and by whom. Some online patient communities base their busi­ness model on selling aggregated data. Yet, how many decisions in the pharmaceutical world on data transparency have been based on meaningful involvement of patients and citizens?

The system can’t have it both ways: professionals and health regulatory agencies want patients to‘grow up’ and take responsibility for individual decisions about data in health and healthcare. But the very organisations seem reluctant to grant them an adult say in decision-making.

Patient Leaders

Meanwhile, patients are doing it for themselves. Many are becoming ‘Patient Leaders’ – influencing change at system level, by modelling the type of relationships they want to see between patients and professionals. The patients are more than ‘representatives’ granted ‘permission’ to sit at the professional table. Patients are creating their own roles and opportunities and are developing the skills needed to change the nature of health­care itself. And they threaten the status quo.

Patient Leaders go the extra mile and take the way they manage their own lives and health to a strategic level. An example is Michael Seres, one of the first bowel trans­plant patients in the UK. Based on his own experiences and needs, Michael invented The Ostom-i™ Alert sensor − a discrete device that alerts patients as to how full their ostomy pouches are so that they can decide if and when to empty them. The device sends Bluetooth alerts to a mobile phone app device telling the user their pouch is filling up. Denise Stephens, who has multiple sclerosis, created Enabled By Design – a user-led community that promotes and supports user-designed solutions for assisted living. Michael and Denise are patient innovators.

Oli Anderson lives with renal disease, provides coaching and peer to peer support for other (renal and non-renal patients) and promotes shared decision-making locally. Alison Cameron, a mental health service user, leads co-production work across the UK health system. Nicola Kingston has a son with diabetes; she promotes patient-cen­tred research and recently co-led work on peer-led education for people with diabetes. Trevor Fernandes had a heart attack and is now working alongside professionals to help change the way inspections happen in the UK. Anya de Iongh has Postural Orthostatic Tachycardia Syndrome (POTS) and uses her expertise to help the design and delivery of clinical training.

These are just some of the people involved in discussions and decisions about data far beyond their own care and treatment – sharing data with the system to support pa­tients, helping organisations change practice-based on what data matters to patients, working with data to change how inspections happen, and educating professionals on the importance of patient-generated data.

For this to happen, patient leaders require meaningful opportunities to input into joint working initiatives, learning and support – in particular with regard to influencing the system through building better relationships – to be valued for their time and expertise, and also need ways to support each other, e.g. through networks of mutual support.

Beyond this, the future of healthcare needs us – all of us together – to move towards different solutions. In the data realm, the questions around data transparency, gener­ation, ownership, and control require patients and citizens to have an equal say at a strategic level. After all, whose data is it anyway?

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This article was written by David Gilbert and Mark Doughty and has been taken from ‘Transparency of Clinical Trial Data’ Report on the 2nd European Medical Writers Association Symposium at http://tinyurl.com/p9ezc66

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The Rep Trap: The Catch 22 of being a patient representative

“It’s only 8 o’clock, but you’re already bored
You don’t know what it is, but there’s got to be more
You’d better find a way out, hey, kick down the door
It’s a rat trap and you’ve been caught”

Boomtown Rats, 1978

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Patient representatives are asked to ‘bring the patient perspective’ to strategic conversations and committees. Without clarity of purpose or support, all around the table can make assumptions as to how the rep should do this. Ironically, the various tactics used can further marginalise the patient perspective and buffer change.

Trap 1

Surrounded by powerful professionals and seeking legitimacy, a rep can overly rely on their own experiences or stories. Some professionals might welcome this as a way of grounding high level conversations in reality (or say so for fear of offending) or be briefly infected with a rush of compassion.

But others may dismiss the ‘representativeness’ and thus legitimacy of such a view – contrary to the story-teller’s intention. Often the story might illustrate an irrelevant issue. I once talked about tea-making facilities on the psychiatric ward when we were discussing inequalities.

A committee is not a focus group. Judicious use of story-telling has its place, if accompanied by strategic insight that helps the group move towards joint solutions. But if used as an end in itself may accomplish little.

Trap 2

Sometimes, the rep works hard to ‘gather’ patient perspectives to bring back reliable ‘data’ about the patient experience. This may make them more credible with professionals accustomed to the arid zones of evidence-based decision-making. But it lets the group off the hook.

Patient and public engagement is a collective (often statutory) duty and the rep should not be used as a free, quasi-operational lead for engagement. Many reps find their goodwill taken advantage of, and have found themselves isolated and exhausted.

Trap 3

More ‘experienced’ reps can come to be seen as a one-stop shop, able to address all problems generated during an initiative. “What do patients think?” I was once asked. “What, all of them?” I thought. This can be flattering, but assumes one person (or two if the committee is generous) can be ‘the expert’.

This mirrors the medical mind-set that we may want to challenge – ‘doctor knows best’ flipped to ‘patient knows best’. Instead of a conduit capable of opening doors to others, reps can unwittingly close doors and the group can tick the engagement box and move on unruffled.

However, we can reframe the notion of ‘representative’ as ‘patient and public advisor’. After all, clinical advisors are commonplace, and bring subject expertise alongside strategic and (hopefully) leadership skills. A patient and public advisor does likewise if supported properly.

These new ‘outsiders-inside’ can also ask ‘so-what’ questions – ‘so what difference will this make to patients? So what will we all do to engage people’? The main aim is to work with professionals, as equal partners, to influence change.

The deeper question is about engagement structures. Maybe ‘representational structures’ are one reason why engagement isn’t working. By seeking round pegs (patient reps) for square holes (institutionally defined, narrow opportunities), we are placing form before function. It strips people of their passion and risks relegating engagement to a tick-box exercise. Let’s ask instead about the purpose of engagement and how people are supported to be effective.

It’s not about where reps come from – having one of those from that group, and one of those from the other. That’s important, but not as important as we think. And the struggle for representativeness often takes up so much energy that it precludes discussion on purpose.

This is not an argument for a new elite. We see people from all walks of life able to bring passion, belief, vision and ‘can-do’ attitude to forge joint solutions. But the opportunities have to be right. Harry Cayton, CE of the Professional Standards Authority says – “If you worried about the usual suspects, you wait till you see the unusual ones”.

Thus far, the NHS has not been interested in transforming engagement, content with representational mechanisms that can buffer change. Now times are hard and difficult discussions and decisions are needed (about safety, integration, change, resources). We need people who can model partnership over polarisation, insight over data generation, new ideas over re-hashing old problems.

Addressing the rep trap is one key to escaping a bigger trap – engagement that does not engage, and lacks impact. Is the NHS ready?

This blog was first published by the Point of Care Foundationhttp://www.pointofcarefoundation.org.uk

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Beyond Us and Them: The role of patients in governance and improvement

I want to write about the future of the ‘patient movement’ – a piece that I hope will stimulate self-reflection in the camp and a bit of a debate about the future of patient organisations, local HealthWatch and Patient Participation Groups. It may gently challenge people, such as my good friends at National Voices, but also provide some ways forward.

But that will have to wait.

The first step towards that article is to provide a couple of thoughts about patient and public engagement, co-production or whatever you want to call it. These in turn set the scene for that next piece.

This short blog (I promise) is about the need to distinguish between two different purposes for having patients as partners in your work. Making sure you keep these two streams clear in your mind can help you avoid other blockages to effective engagement.

The background – those endless twitter spats about representativeness

Whenever I wade into a Twitter conversation about patients as partners for change, it lurches sooner or later into issues of ‘representativeness’ and ‘representation’ – hissy debates about ‘who’ is at the table and their relative legitimacy that serve to drown discussion on the ‘why’ of involvement, which for me is key.

My blog on the Rep Trap disentangles the issue of representation and reframes the ‘rep’ role as ‘patient and public advisor’. But there is a step before that. It’s about being able to distinguish between two different functions for patients in the planning and design of services – and the requisite mindsets needed.

1. Check – the governance role  

When thinking about planning and design services, if you want to involve patients at all (and of course you should!) it may be useful to have people in a ‘governance’ role – that is: part of a committee, steering group, or other mechanism that requires them to provide ‘critical challenge’ or provide part of an overview of proceedings.

This may be at corporate or programme level. And these folk adopt a ‘scrutiny’ role and need to have strategic expertise and other skills. They need to be particularly good at asking the right questions that keep things on track. In some cases, this can tip over into an adversarial mode, particularly if the role is unclear or if there is a lack of learning and support.

Here, there will be questions about whether the ‘rep’ is the conduit for other ‘voices’ and/or opens the door for others, ensuring the group as a whole listen and act upon other people’s views. Now, it’s time to read that Rep Trap blog! Or wait till the next bit…

2. Help – the improvement role 

In contrast, within service development work (quality improvement, pathway redesign, that sort of thing) you need people who can take off that ‘checker’ hat and work as partners for future improvement. These are the folk who can bring insights and richer understanding to the task at hand, help generate more options and ideas and change practice. NB. My CLAHRC NW London Fellowship Project focuses on the benefits of patients as partners in service improvement.

Again, people need to be able to build relationships in order to influence, but they should also be able to be forward thinking and insightful into possibilities. They are not so much the askers of ‘what happened’ or ‘what did you do’ but are the ‘what if we…’ collaborators. This is an instinctively partnership mindset.

By the way, you may still need the ‘reps’ (the checkers) on the project steering committee or programme board overseeing the work of course. If you are on this road, then the question is not about who ‘represents’ whom, but what is the right mix of people to have in the room in order to gain insight and help generate options for the future. These may be a mix of people with ‘relevant experience’ of using services, as well as patient advocates, for example, people from patient groups, involvement specialists and the like.

Can the patient movement change?

Of course, the two roles – governance and improvement – can overlap, and there are times when you need, as a patient partner, to be able to both critically challenge and collaborate. And to be a ‘checker’ does not mean you are not helping! However, this distinction seems to have unstuck a few people mired in futile debates about representativeness, and supports us to ask the initial question, what sort of work do we want to do? Before we try to address the ‘who’.

From here, it is a short step to the next blog: The patient movement has historically had to play the outsider. In seeking its legitimacy through a justifiable striving for independence, it has often risked adversarial relationships and our influence has been narrowed due to having to join those endless boring scrutiny-type committees.

Those ‘us and them’ relationships are not right for the situation we find ourselves in, with a healthcare system and staff needing support and joint working to find solutions to a crisis. I think we can help, but only if we have the right mindset, opportunities and skills.

The question for my next blog is how those in the patient movement can position themselves as partners for improvement and transformation. The future legitimacy – and I believe, the very survival – of the patient movement and healthcare depends on it.

I hope this helps? Let me know.

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