What’s The Opportunity Here?

Have you ever thought, perhaps when you began your career before your idealistic imagination began to fade, that you can make ‘a difference’. You know, making the world a better place through your own contribution. I certainly had dreams like that. My trouble is, despite the years of unfulfilled promise, I still think that I can do my bit to improve our country and its citizens.

So, you may ask whilst scratching your head quizzically, what on earth has our youthful idealism got to do with health and social care research? Well, this short piece is attempting to persuade you that you are already contributing to a sea change in democratic aspiration and outcome by the adoption of methodologies that have been introduced to this amazing profession. Ways of working that really do have the power to change not just the provision of health and social care to truly become public services, but could also, if led well, change the fabric of the contract between citizen and state. A true democratic revolution.

We are all buried in our own little worlds. Work, home, work, home followed by work and home. Sometimes we are so focussed on our own day to day lives that we are prevented from seeing the bigger picture. That is why I’m going to make my point in a way that allows us to see that the emerging efforts of delivering health and social care co-production, as a real partnership between researcher and service user. There is huge potential that goes far beyond our daily experiences, and if harnessed with the similar agency of others within our profession, can be a real catalyst for a long lasting and fundamental culture change that can actually transform our world bringing better research, better services and better, active citizenship for us all.

Let’s look at the short-term impact of research co-production between researchers and those with lived experience first, before zooming out on the wider potential impact upon our society.

The Narrow Focus

We’re already experiencing the transformative power of co-production between health and social care research. Since methodologies have been introduced to make real this approach the following gains have been quickly realised: -

·       Research projects have properly taken into account the needs of people with lived experience, thereby creating research outcomes truly tuned into a more effective reality.

·       Groups often at the margins of society (such as ethnic minorities and people with complex mental health problems etc) have begun to be heard and understood, and indeed in some cases have gone onto shape research and subsequent service design.

·       Service users involved in both consultation and in active design have discovered their own agency, often for the first time. From being the passive 'done to’ to active citizenship, at least in this arena.

·       Researchers have experienced the value of bottom-up design and it’s impact on their particular philosophy of research.

In Sheffield the pioneering Community Research Link Worker model has created a bridge between health and social care research professionals and social groups who too often have been at the margins of society.

In itself, health and social care co-production with ordinary citizens is becoming a huge success and, as the wider focus becomes clear, is well positioned to produce social and culture change beyond the growing number of research projects undertaken so far.

The Wider Focus

Democracy according to the Encyclopaedia Brittanica means ‘rule by the people’. In terms of government this has been realised through electing representatives to rule on our behalf. As far as health and social care is concerned, democracy is being made real through participation. The activation of citizen responsibility, through involvement, in commissioning public services that will meet both societal and individual needs and through an informed contribution to both the design and delivery of said public services. It’s much more fundamental and dynamic than the electoral process, it actually teaches both leaders and the led that they need each other, they need to work together to achieve their mutually compatible ambitions.

This is democracy in it’s truest sense. Enabling all of us to co-operate in the creation and maintenance of the best of public services. So, in positioning health and social care research in this way we can indeed change much more than just the arenas we work in, we can surely begin to create a change in the very fabric of our cultures. The active citizen truly is democracy in action, isn’t it? What will be the inheritance for both the active citizen and the productive state that this level of hight level co-operation clearly requires? We need to find out. So, what needs to happen next?

·       Those of us thinking this way need to get together; share our stories, compare our lessons and our hopes for the future.

·       We need to influence the movers and shakers and champions amongst the powerful.

·       We should be researching these methodologies so we can learn and create ways of working that will be ‘the way we do things around here’.

·       We should actively communicate beyond ourselves. There are enormous advantages for other parts of public service provision to share from this way of working.

By raising the profile of co-production in research, service design and delivery, we really can do so much to realise our youthful ideals of ‘making a difference’. What’s your view?

Dr Josie Reynolds is Clinical Academic Lead of DERA and works as a GP in North Darnall, Sheffield. In this blog, she provides a very personal insight into the highs and lows of her career journey so far and how she discovered the power of research. 

Finding my people: Josie’s journey to DERA

I was recently asked to give a talk to a group of Clinical Leadership Fellows from across Yorkshire and Humber about my career, and it got me reflecting on the journey so far. I thought it might be nice to share some of these reflections with the wider DERA community, so that our partners, community groups and research participants know a bit more about me and my motivations for the work we do and the community we are creating. 

Finding my home in Sheffield

I first came to Sheffield as a medical student in 2007 and graduated in 2013. Along the way, I fell in love with Sheffield’s warm, humble, community-focused and laid-back way of life. During my studies I intercalated, which means taking a year out of medicine to do a research degree. That was my first taste of research. I hadn't really considered it before, but a project caught my interest and it opened my eyes to research as a tool for change.

Not quite fitting the mould

Whilst at university, I always felt I didn't quite fit the mould of the perfect medical student. Being top of the class or acing every exam never really drove me. I found everything I learnt about the human body and clinical treatments fascinating, but what I cared most about was health and social justice, and I sought out every opportunity to explore that side of healthcare. At times I wondered whether clinical medicine was really for me, and I even considered public health, but the one-to-one contact with patients kept me on the clinical pathway. 

The first setback

My first major setback came when I applied for an academic training post after medical school and didn't get a place. It felt like rejection, and medics don't tend to deal well with failure, so I could easily have decided research wasn't for me.

Instead, I completed my junior doctor programme, but after two intense years of hospital medicine I needed to escape. I went to live and work in Jamaica for two years, and that's where some really important things fell into place for me.

Lessons from Jamaica

The first was that I worked in a number of primary care roles, in a variety of settings, and that's where I fell in love with general practice. Before then I'd been set on ophthalmology, among other ideas, but working as a GP in Jamaica, I realised that what motivated me was the person in front of me, not the disease they had.

The second was that I ended up working as a research assistant at the Caribbean  Institute for Health Research (public health research department) at the University of the West Indies. I worked across a range of studies on lots of different topics, and it was an incredible experience - I learnt so much from the academics there. One moment that stayed with me was hearing faith leaders, politicians and health professionals all in one room, talking about mental health and faith in the Caribbean. It felt very impactful to create space for conversations that were not always easy to have in other settings. I witnessed the power of research in action. These experiences brought me back to considering research longterm.

Finally, Jamaica forced me to examine power structures and privilege, on a global scale as well as in individual interactions. Living in a post-colonial country, with constant reminders of the recent history of colonialism and the transatlantic slave trade, gave me a very tangible understanding of racism and oppression. I felt research could be used as a tool to disrupt those power structures through evidence and advocacy, and it set me on the path I'm still on today. My time in Jamaica was a pivotal experience for me.

Finding my rhythm

When I came back to the UK, I went straight into a master's in public health at the London School of Hygiene and Tropical Medicine. I'd finally worked out exactly what I wanted to do, and I was determined to throw everything into it. But in doing that, I ground myself down with the expectations I placed on myself. Over the next year or so I experienced burn out and was forced to slow down, listen to my body, and learn to work in a more sustainable way.

During the following few years, I experienced other personal challenges which led to me being a single Mum whilst working hard to complete my GP training, continue with my research projects and run after an energetic toddler. Through the difficult times, I leant on the brilliant colleagues around me, particularly the DERA team, to keep me on the path. The collective positivity and unstoppable momentum of DERA was a source of motivation and strength. I had definitely found my people.

Finding my purpose

Over the last few years, I completed an NIHR Academic Clinical Fellowship and was finally doing the research I really cared about. One study ended in an exhibition of our findings; the highlight of my career so far. We worked closely with communities and participants to influence how decision makers and the wider community think about structural racism within dementia services, and I'm really grateful to everyone who helped to make it happen. 

I'm now Clinical Academic Lead of DERA, and it feels like we really are starting to shift the dial on research inclusion, and therefore in time, health equity. I had a number of unsuccessful funding applications along the way, but I'm now also doing a part-time PhD at Oxford, co-designing an intervention with communities to address racial inequity in dementia services. 

Pursuit of Justice

Looking back, I think the thread running through it all is not being afraid to disrupt power and challenge narratives in the pursuit of justice. I've often felt like an insider/outsider and used that to my advantage - a critic on the edge. Research has given me a credible way to do that.

The difficult moments have taught me the most, so now I try not to be afraid of failure, as it's usually where the growth happens. I look forward to seeing where DERA and our partners can go together, using the power of research!