Recently I was fortunate enough to be selected to participate in the second cohort of the NIHR digital leaders programme. From the start a number of questions swirled around in my mind; what is an NHSI Digital leader?, what is the NIHR digital strategy? and fundamentally what is the NIHR?
Literally, of course, it ‘s the National Institute for Health Research but as a provider of patient care and a researcher, somehow this organisation seemed far removed from the daily work of the NHS. As I set off for the course my imposter syndrome was at its peak: why was I here and was I really qualified to be? I began to relax as I got to know my fellow digital leadership students cohort who fulfilled a diversity of roles: from the ultimate fundholders, the Department of Health, through to the end recipients, individual researchers.
It is often difficult to define what arm’s length NHS bodies like the NIHR stand for. Researchers like myself are the outsiders, seeing the NIHR primarily as the purse holder who decides whether or not to fund our research but NIHR insiders seem to see the patients as their real customers. Could this be?
Over the three days I came to think differently about the NIHR. I was struck by our cohort’s shared sense of purpose, improving patient care;. All of us could just as well be a patient benefiting from an NIHR funded study as easily as we could be a researcher receiving funding. Whether we were a core member in one of the many ‘confusing’ NIHR departments or more removed, I came to understand us as a community who together could play a leading role in the future.
At the same time that the NIHR is ‘going digital’ so is the wider NHS. Never before has there been such a focus on digital and perhaps never with clearer intent: digitised records, interoperability, apps and wearables all support the public in taking control of and managing their own health. This is not really moving back to a place when people relied less on healthcare professionals but forward to a place where people have access to greater knowledge that enables them to do this in an informed way. What would these changes mean for the potential to answer the research questions that matter? Arguably, in putting patients in the driving seat new questions are likely to emerge: questions that focus on population health rather than ill health. Will we be equipped to do these studies when despite many years of talk and initiatives to turn the NHS tanker towards the promotion and maintenance of health, its course and its funding remain focused on ill health?
The need to deliver a healthier nation must surely drive the future direction of an NIHR whose portfolio is currently structured around disease not people. What would happen if instead the NIHR shaped its work around populations of researchers and people, recognising the diversity amongst those it served? Could such a reframing open the door to novel solutions to improve its offering, grow its customer base and grow its outputs in service of the ultimate goal: preventing disease and where that is not possible helping people to live well with disease? Along with our medical colleagues, NMAHPs are ideally placed to generate research about how we live our best lives. In fact arguably, we bring a different perspective because the primary function of medicine is to cure whereas the primary function of our roles is health promotion and maintaining function. This is captured in Virginia Henderson’s definition of nursing:
“The unique function of the nurse is to assist the individual, sick or well, in the performance of those activities contributing to health or its recovery (or to a peaceful death) that would perform unaided if he had the necessary strength, will or knowledge. And to do this in such a way as to help him gain independence as rapidly as possible”
So I come to what the NIHR has to offer me. Whilst on the course, I came across a twitter campaign #MakeTimeForResearch and I was reminded of another nurse-led twitter campaign #WhyIResearch. Both of these seek to promote research activity amongst NMAHPs. Why are such campaigns needed? Because these groups are underrepresented in research and yet have lots to offer. The NIHR has sought to promote clinical academic careers for these professionals but progress is slow.
I am a nurse of 26 years. I know many NMAHPs who like me are passionate about the care they give patients and passionate about both using and generating evidence to make sure that care is the best possible. They are also completely confused about funding, about getting started and they are time poor. They usually work in teams in which experienced researchers from their own profession are not available to them and there is no pipeline of studies generated by those who have gone before and who are available to share the experience. Instead, as NMAHPs, we are mostly early career researchers with very few leaders to follow. This makes framing research questions and writing research proposals harder and the research journey longer. Arguably, the disease focus of the NIHR coupled with our unique characteristics as future researchers limits our ability to access its resources . This, in turn, limits the ability of the NIHR to ensure that the breadth of research needed to meet patients is delivered. Our lack of research experience makes us a hard-to-reach community and for the NIHR this means that efforts like targeted programmes have fallen short because they don’t recognise the unique needs of this group.
At University College Hospitals London (UCLH) we established the Centre for Nurse and Midwife Led Research (CNMR) to help this community navigate the complexities of the NIHR and other funding organisations, to offer support by getting experts to help with some of the work of developing an application, and ultimately to come together as a community to support each other. We have had some success but we are unusual here in the UK being the only such NIHR-funded centre. The NIHR 70 at 70 programme is welcome but progress is too slow and the NIHR could do more to develop these potential and early career researchers to meet the needs of the NHS of the future. Here is a target group of customers ripe for NIHR digital solutions that would enable them to research.
Often the public talk about the NHS as our NHS. There is a sense of pride and ownership. Through the course I came to learn that this is ‘my NIHR’ as much as the NHS is ‘my NHS’: a body set up for all, for collective good. However, just as we need the NHS to listen to us as patients to make it easy for us to participate in the shared goal of maintaining our health so we need the NIHR to listen and make space for us to be active clinical researchers who can contribute to our shared goal of more evidence in service of better health(care).
In conclusion, can the NIHR ‘go digital’ while its ‘customers’ are diverse ‘moving targets’ in an NHS that is changing at pace. Arguably, it must but it needs to know who its customers are and come and meet us in all of our diversity, it will need to understand our customer profiles and reach out in different and new ways to do this. Partnering with others affords that opportunity and it should scan the horizon for those partners. It will need to enable us, it’s customers, to ask our customers – patients and the great British public – what they care about, what are their needs and how do they want to participate. Please, NIHR, make it easy for us to do the right thing and do it quickly. Give us solutions that speed up our access to information, to your expertise, that connect us to others. Give us technology that speeds up our access to funds to do research. Harness digital technology to give us novel solutions that release time for research in our busy lives where ‘protected’ time is not always possible. Finally, engage with us at the frontline and let us co-create that future with you.