How accessible is research – really?

Dr Sarah Williams, Associate Director of Research and Improvement at Solent NHS Trust, shares her thoughts on the 2018/19 NIHR league table rankings and the importance of research in healthcare.

This week the National League Tables for research activity in the NHS were published. Solent has been one of the top three performing Trusts in its category since these were launched, and this week we learned that we are, once again, in the top position – the ‘most research active Care Trust’ in England.

This feels like a good time to reflect on what that means to me, both as someone who leads a research team and as someone who has walked on the patient/carer path recently, and has seen research ‘from the other side.’

The league tables are collated by the National Institute for Health Research (NIHR), who count how many studies are run in an NHS organisation, and how many people have participated in those studies. NHS Trusts are categorised by type and ranked; Solent NHS Trust is a ‘Care Trust’ and loosely this means a community organisation, caring for people out of hospital.

Activity vs. Impact

In 2018/19 we involved 2855 people in 50 studies, which is a 20% increase on the previous year and pretty good going for a community organisation that receives vastly less funding for research than the acute sector. For us, the league tables are a funny thing – a crude measure of activity with no indication of impact relating to patient benefit, but nonetheless, really handy for a positive message. We are fortunate to have a lot of support from our Board, and we work very hard to make research accessible to all clinical teams, patients and communities. To see a year on year improvement is very satisfying, and a clear numerical indicator is great PR!

But, we are also fully aware that we’re a long way off making research part of everyday care, which is weird as everything we do in the NHS (our care, our medicine, our processes and procedures) comes from the knowledge we’ve gained through good quality research.

The NHS may not be perfect, but it’s reliable - we know that if the brown-stuff hits the fan, the NHS will step up: we’ll be given care en route to hospital, when we get there we’ll benefit from immense knowledge, we’ll have tests and receive treatment and this will happen over and over through our whole lives. Our kids will get vaccinated, we will be screened, we trust that our medicines will have been rigorously tested for safety, and NONE of this happens without research.

Hidden research

For some reason, in the everyday extreme pressure of delivering NHS care, it is rarely centre stage. I know as a professional leading research, that when we go about our daily lives in the NHS, we easily absolve ourselves of the responsibility to continue to drive knowledge and be part of research. We are so comfortable with the assumption that someone else does that “clever” research, that we let ourselves off the hook and say we don’t have time, or resource, or skill.  Whilst there is no doubt that the NIHR has supported fantastic infrastructure that have helped to increase the volume of research across the UK phenomenally well, in my experience research still sits separately to every day care in most of the NHS (certainly the part that almost every patient sees).

It is an uncomfortable truth, one that I have experienced personally. In 2017 my Dad, one of the best people in the world, was diagnosed with GMB4, terminal brain cancer. Overnight, we pretty much lost this hilarious, vivacious, loving force of nature to a world of confusion, surgery, treatment and an inevitable early and awful death. The horror of that experience is for another time, but many will relate to the helplessness felt as a family member – my only useful skill was my knowledge of the NHS (for navigation purposes) and research.

Immediately I was asking about trials and opportunities for novel treatment. Bear in mind, we were being treated in one of the leading research hospitals of the UK. Despite this, not one member of any clinical care team (neurosurgery, oncology, primary care, specialist nursing and so on) was able to tell us about research. Worse, in that leading research hospital, I asked five consultants about research and responses included: “we don’t do research here,” and “research is only something we think about when we are out of options.” Outside of that hospital I asked every healthcare professional we came across (and we hit pretty much every part of the system), and not one person could talk to me about research – or even signpost it to me.

I’m not saying this to name and shame, I’m saying it as I now know first-hand that, despite the extraordinary success of the NIHR in increasing research activity, in spite of our success in league tables and immense effort, research is absolutely not an integral part of care or NHS business.

Let’s #BePartofResearch

For those of us that work in research, we need to work out how to encourage change - not by moaning about how we are misunderstood, but by making research useful for those on the front-line; the incredibly busy and hugely strained. We need to find a way to make it easy and beneficial, we need to work with academic colleagues to make research as useable as it is publishable (not the same thing, trust me). This needs a fundamental shift in how research is embedded in education, in care and in the patient ‘expectation’ around their care.

My Dad and many like him  would have loved to #bepartofresearch but neither I nor the NHS could help him with that. If I do nothing else in his memory, I really hope I can be a tiny part of making research really part of everyday care. Ideas on a postcard please…?

About the author

I am the Associate Director for Research & Improvement, and lead the Academy, its core team and the clinical academic programme for Solent NHS Trust. I also work nationally and across Wessex on a number of areas, such as quality improvement, research strategy, patient and community partnership working and workforce development.