The impact of research has to be defined in terms of patient benefit, says Mark Taylor
I have worked within the third or public sector most of my life and for various organisations connected to health and clinical research for well over a decade. I would love to tell you that I am a highly qualified researcher with a string of high level publications to my name, only one step away from curing this or discovering that. I am, however, that creature many of the tabloids love to hate—an administrator/manager within the health system.
My job is at the National Institute for Health Research (NIHR). We fund health and care research and help translate discoveries into practical products, treatments, devices, and procedures. We help ensure that the NHS is able to support the research of other funders to encourage broader investment in, and economic growth from, health research.
Many have not heard of the NIHR but, with over a billion pounds allocated by us for research every year, our “reach” into the research hinterland can be impressive. We work with charities and the life sciences industry to help patients gain earlier access to breakthrough treatments, and we train and develop researchers to keep the nation at the forefront of international research.
As I head screaming into my fifties I am old enough to look back at a career and say that the work at NIHR may be the most meaningful I have done. Not because of what I might achieve (I am just an administrator/manager, remember) but what I might, with help from others, encourage.
I am the Head of Impact for NIHR, a job title that is perilously close to that of Director of Better from the BBC spoof W1A. Thankfully this is a job with real intent. Put simply we spend a billion pounds a year on health research. What impact does it have?
To be clear this is a different question to the default one people tend to ask on research funding which is “what did we get for the money?” That’s a straightforward question and straightforward to answer. Research funding, whether from NIHR or not, will produce publications in medical and scientific journals. It will create new or improved ideas (intellectual property) that may be sold or new companies formed around. Those ideas that are not commercial may still find their way back into the health and social care system as training aids or workshop material, and as each year passes the “body of knowledge” grows bigger and deeper. That is an important end in itself.
All funders now ask what I believe is a better question. What impact does our research have? It’s a beautifully simple question, but fiendishly difficult to answer. Firstly what do we mean by “impact”? To my mind “impact” has to be defined in terms of patient benefit. What impact does the research and work we fund have on health services and the patient experience? It is a totem of NIHR that “We fund health and care research … involving patients and the public in all our work.” To look at impact outside this obvious caveat would be self-defeating.
Beyond that what is patient benefit? How is it best described or even identified? An academic or clinician may undertake the research, but who is responsible for creating the impact, for example a tangible improvement to patient care that is many years, if not miles from the original untested intangible idea? Research rarely leads to the “finish” product. A member of one of our more progressive Clinical Commissioning Groups once described research as a process that gets ideas from the drawing board through the factory to the gates. At that point Universities and the NHS are ill equipped to take such ideas further. That evocative statement has stayed with me.
When you fund a billion pounds a year, from small aliquots to major centre investments, from simple (sic) questionnaire feasibility studies to massive research projects in cancer, we know that one model to identify and explain the effects of research will not fit all. We know from such exercises as REF—the new system for assessing the quality of research in UK higher education institutions—that the impact of research takes time to occur and is co-produced or has many hands. We also accept the old dictum, that researchers may have a duty to experiment, but equally a right to fail. Yet even failure may have a useful impact. So, unsurprisingly, what seems like a simple question creates a tsunami of queries to follow up.
We are all prisoners of our past, trapped in the culture we inhabit, described by many as our subconscious biases. My own (third sector, intellectual property, white male and pale) are obvious and I spend time and effort to reduce how they might affect the way I lead the impact work here at NIHR. The danger is that I reframe the hard question “what is impact” to the more straightforward one “what did we get for our money,” because that is the bias of the system.
The other bias I believe we need to be wary of is framing impact entirely from the academic, clinician, or “producers” point of view. How do we ensure that impact is described in a manner consistent with the patient experience? Through impact assessment can we give patients more tools to help shape the research future, their future itself?
This is where, I hope, my past may actually help a little. Diagnosed with relapsing remitting multiple sclerosis in 2004, I have been described as having a conflict of commitment when it comes to my work. I blog elsewhere as Man Of Rust about coping with my co-morbidities through running and triathlons. My son recently described that as being “a really crap Tesco Value superhero,” but the conversations with my tribe because of it have been eye opening. So yes I do have a conflict, but as conflicts go I think it is a useful one.
Especially since I am not doing this alone. I go back to my first statement. I am an administrator/manager. I believe I can help set the agenda and help others frame the questions. I don’t expect to identify impact, but give people the tools and space to do so. My job is to ensure that impact assessment makes sense within NIHR and the work it funds. As important is to ensure that impact assessment is less about counting beans and more about patient benefit whatever that might mean.
Wish me luck.
Mark Taylor is Head of Impact for the Central Commissioning Facility of the National Institute for Health Research.
Competing interests: Head of Impact (CCF), National Institute for Health Research, Director of NFM Consulting Ltd (currently being wound down), Member of Patients Active In Research (PAIR), Oxford Biomedical Research Centre.
This blog contains the personal views of its author and is not a formal NIHR communication nor is it endorsed as such.