David Gilbert, Patient Advocate & Author  Inaugural Patient Director, Sussex MSK Partnership Author, The Patient Revolution

David Gilbert
Inaugural Patient Director
Sussex MSK Partnership
InHealth Associates

Can you introduce yourself briefly and your connection to patient engagement?

David: I’m David Gilbert and I have spent half my life as an activist, including being a mental health service user, consumerist, someone who is quite upset with the current professions, systems, and supporting organisations which I hope to change based on what matters to patients.

From your perspective what does a sustainable health system mean to you?

David: So I want to subvert things a little and say that I hope to advocate for the patients’ need to create unsustainable health systems. I want patients to be well. And to frame it as what can be done to sustain health systems, I feel may be the wrong question, because health systems are already sustained. I want patient engagement to create unsustainable health systems that focus on what people with real life experience actually need by concentrating on social inequalities, on diversity and inclusion, and what matters to poorer communities, much more than they do so currently. As all academic leaders know, we need to concentrate more on the problems in our communities. At this time of ecological crisis of volatility in the world system, to argue, to sustain health systems is actually to sustain the status quo and to contribute to further inequity.

Thank you for that perspective David that challenges the notion  we presented in the question on sustainability.  Should we seek to redefine ‘sustainable’, rather than say we don’t want to sustain the health system?

David:  I think the word ‘system’ is always problematic. I wish we had a phrase instead like ‘ecology’ or an ‘ecosystem’, or maybe a ‘sustainable health ecosystem’. Through my expertise from over the last 20 to 30 years, my sense is that patient and public engagement does not work. I’ve seen a lot of attempts on getting feedback from patients through questionnaires, surveys, focus groups where patients tell their stories and become very vulnerable and give audiences a compassion rush for a while, but then those records or data are not used and we have a very child-parent like transactional relationship within the engagement system.

For instance, I give you my symptoms aka data, you as a professional then make decisions as to what to do with my data. And that’s a very child-parent like approach. Or I get asked into a room to be a representative of how many hundred thousand people, and people lean in and say “David, so what do patients think?” and I have to wear a suit and learn the jargon and read papers a day before, which are 200 pages long in 10-size font and lean on my own stories, and I’m told that I’m not representative or that I don’t have the skills to articulate and I eventually get marginalised in a different way at the strategic level. Representation becomes polarised and becomes a child-parent like relationship at the committee room tables. So what I’ve seen and I really do believe over last 25 years is that status quo of engagement doesn’t work for everybody because it sets up a binary relationship that is unequal and those things that I bring from my lived experiences. By being affected with a life-changing health condition for example, the jewels and wisdom from insights that we bring from the our sufferings are effectively ignored and instead I’m asked “did I like the food?” or “were my doctors nice?” and ignores what happens in my life and the passion and wisdom I have for knowing what good care looks like. It doesn’t bring me any solutions, instead, we have an engagement industry that doesn’t really engage anybody, doesn’t allow you and me to have conversations about difficult issues, about how to change health system and draw upon what I know works and what you know works from our different and equal perspectives. I’m quite interested in how engagement can work differently, how we can have our conversations about difficult issues, and how we can all contribute to the wider sustainable ecosystem that requires quite a lot of change from all sides.

Can you think of small steps towards that, or examples of where some small change is happening or some model of where what you’re describing is starting to happen?

David: You have to start somewhere, so I understand that question. I think we see it in the learning and development sphere, so a patient will be asked not just to give their experience but to stay in the room and contribute to what can change in a professional capacity, so I think there’s lots of good examples in the learning and development field. I think there are lots of good examples of patients co-researching projects deciding on priorities in academic institutions.

I think what I’m particularly interested in is patients becoming involved in improvement work, in quality improvement. I’ve been involved in a project in my own organisation where we were talking about the administrative systems whereby, we fix the appointments of patients, they don’t turn up, and we get a lot of complaints and the switchboards are jammed by people trying to rearrange their appointments, and we had what we termed “failure demand”.  70% of calls we received were because of system failures of our appointment systems. So, one of the patients, we call them ‘patient partners’ in my organisation which is the musculoskeletal service located in the south of England, suggested “Why don’t you let me call in at a particular time to arrange my appointment? Because every time you send me a letter or phone me, I may be in the shops and may be in the carpark and don’t have my diary to let me opt in” and the professionals around the room thought “Goodness, we’re not sure we can do that”.  But we conducted a pilot, and we worked out that we would have saved three and a half thousand cancelled appointments if we were to roll out opt-in appointments.

The system has been slow to change, and I think the problems are as much as in implementation and even the simple things aren’t easy to change in a complicated system. As we’ve progressed, we have done good by the admin service as the people at the end of the phones are not getting negative reactions from patients, and are able to offer choices and that has stemmed primarily from changing the role of that patient from telling their story at the beginning,  to involving them in the improvement work and I think it’s the small change from saying ‘give us your feedback’ to saying ‘stay in the room because we’ve got a difficult problem here’ makes all the difference.

That’s a really great example, thanks for sharing. So what do you think needs to change to really scale that and create that cultural change, what more do you think can be done?

David: So I think in people’s minds the one thing that needs to be borne in mind is a phrase that I keep on going back to which is ‘people who have been affected by life-changing health conditions, injury or disability’ which is a phrase I prefer to use than ‘patient’ or ‘health consumer’, it is a bit more long-winded but I’m sure we can find an acronym for it, that we bring jewels of wisdom inside from the caves of suffering and once you take an asset-based approach to individuals as we should do to communities ,so it comes straight from communities to development thinking.  Once you do that, your mindset changes because then you think actually this is not just focus group fodder, this is let’s bring people to the table, let’s forget about representation, let’s find ways of being with each other and that’s the stem.

Structurally, I’m very keen on a model that we’ve developed in my own service whereby I’m a Patient Director. It’s an executive role, commensurate with the clinical and managing directors, I have an operational portfolio of patient and public involvement and experience and the like, but what I have is a pool of paid, supported and trained patient partners, like that person whose stayed in the room for those 4 or 5 days, she became our first patient partner and we worked together to co-design a pool of improvement and safety partners and they have leadership skills.  So they bring what they bring but they also supported to ask questions, challenge assumptions, be vulnerable, disclose, really rehumanise the discussions . So that model of having a Patient Director with lived experience at the very top of an organisation, shared decision-making at a senior strategic leadership government level alongside patient partners and improvement and safety level who themselves move into government roles, what that bring is a career progression for people. It brings in those renewable, shall we say sustainable, resources into the heart of healthcare.

So going back to the original question, if we want to sustain health systems as they are and imagine, and envisage, a beleaguered health system, up against the demands of the population, a bit like a wall against an oncoming river, then that’s a recipe for continuing polarisation and power-play. But if we support with lived experience to be our resource in the future, to come in, to peer support, to lived advocacy, to do recovery work, to co-design and co-deliver resources, we have an almost infinite solar power for a sustainable eco-health system, so patients become a solution rather than problem.

There are potentially a few good apples who are also hungry for change. How can we support and empower them to speak up within their organisations?

This is it, you are doing it.  So all one can do is offer the space. You can’t empower people, what you can do is sow the seeds and create the climate. There are thousands and thousands of people I know who could do this easily, with a bit of support, particularly confidence-building and recognising their expertise, because they have been damaged, they have mental problems, have damaged relationships, don’t trust anybody, they are broken and ill and in pain so we’re working with people for whom this is immense emotional labour so all we can do is creat opportunities. So let’s say if we are developing a network, a third of them are going to be managerial, a third clinicians, and a third patients and you start from there.

What is your advice to new multi stakeholder regional platforms like CAPE  in Asia where patient engagement is still in a nascent stage?

I don’t buy that assumption because when I was a younger community development activist, my heroes were in developing countries- there was peer support for Tuberculosis , there were Chinese barefoot doctors, there was a man in Bangladesh running a drug factory.  Community development is what developing countries know all about and being fledging or being new means you don’t have to go through what we’ve gone through. I think it’s probably deeply patronising for me to say you’ve got to learn from us, I know from your friends in the SingHealth Patient Advocacy Network (SPAN) they’re doing amazing work and they don’t realise that they’re way ahead what some of us are doing. I think there is an advantage in being new, all I would say is don’t make the same mistakes, don’t set up all the focus groups, don’t do all the surveys, just go straight in and do the community development, peer support, have people at the table. I think there is an advantage to freshness and that huge legacy of community development not to be underestimated.

I think the thing is to sell the benefits. Even within the health system over here, there is a real boredom around patient and public engagement. So, I think if you can get one or two projects going where there is co-production, people see the benefits and people will shine the light on it. I don’t know where the challenges are, whether its policymakers or managers  or commissioning level of funding, I don’t know enough about the system, but my guess is that they need to do engagement by getting feedback and by having representatives on committees and maybe gently challenge the model of engagement that they default to; and that there is another way.




Patient Leaders | Healthcare Providers | Academics


Fatima Lorenzo, Patient Advocate. President, Philippines Alliance of Patient Organisations (PAPO)
Ritu Jain, Patient Advocate. Board Member, Asia Pacific Alliance of Rare Disease Organisations (APARDO); Council Member, Rare Diseases International
Ai Ling Sim-Devadas, Patient Advocate  Co-Chair SingHealth Patient Advocacy Network (SPAN) Global Patient and Family Advisory Board, Beryl Institute

David Gilbert, Patient Advocate & Author  Inaugural Patient Director, Sussex MSK Partnership Author, The Patient Revolution
Naomi Sakurai, Patient Advocate  President, Cancer Solutions Japan
Pru Etcheverry, Patient Advocate  Regional Director Lymphoma Coalition    Japan

Melanie - CAPE website
Joanne Yoong, Senior Health EconomistCentre for Economic and Social Research, University of Southern California; CEO, Research for Impact  Japan
Renzo Guinto, Planetary Health Specialist Director, St Luke’s Medical CentrePlanetary & Global Health Program  Japan