We fund NIHR research that will meet the needs of the NHS (patients, clinicians, managers) and other health decision makers. Hence we are 'needs-led'. NETSCC puts a lot of effort into ensuring that our research really is relevant. That effort is worth it because it adds value to the research and ensures that we avoid the waste of funding research that is not relevant.
Not rocket science, but really valuable nonetheless. (For what happens if you don't make that kind of effort, see this link on Avoidable Waste.)
The question then is, how best to assess what research the NHS needs? The prioritisation processes that our NIHR programmes use have a range of criteria (see eg here for HTA), but they all centre on how helpful the proposed research will be. And typically research will be helpful (there is an opportunity to make a big difference) where there is a lot of ignorance that can be reduced in an area where there is a major burden of ill health.
Hence the interest in this 2011 paper from the USA, looking at NIH Disease Funding Levels and Burden of Disease. (NB This paper doesn't stand alone and is part of a big academic and policy literature in this field. For instance, burden of disease was extensively used in the 2006 Health Research Analysis Reports of UK non-commercial health research funding . But it is important as a recent high profile example of the sort of analyses that people do.)
The authors looked at NIH funding in 2006 across 29 common conditions and found that "levels of NIH disease-specific research funding correlate modestly with US disease burden". Conditions receiving more than expected were AIDS, diabetes mellitus and perinatal conditions. Conversely, depression, injuries, and chronic obstructive pulmonary disease were the most 'underfunded'.
We discussed this paper at an internal NETSCC seminar earlier in the year. Some of the points to emerge were…
Burden of disease:
- Pro: it has the advantage of being easily grasped: it's a powerful communications tool. Research funders do need to take it seriously.
- But: burden of disease (in this case measured by DALYs) is being used a proxy for need. Is it good enough as a proxy? The real issue surely is, what are the 'tractable research questions'? And then those tractable research questions have to go into a funding melting pot along with cost, public demand and politics.
Levels of funding:
- do we need to take into account the overall levels of funding? i.e. NIHR + MRC + charities? (and perhaps industry as well??)
- NB Comparisons with USA are tricky because the NIHR differs from the NIH in having a focus only on applied research
As a tool, comparing burden of disease with spend:
- we have used it internally in the past
- it can be helpful from a public accountability perspective
- however it risks inviting people to drill down into the detail of individual projects
- and it is not feasible for some research programmes (such as HS&DR or PHR) and may not work for a translational programme such as EME
So, this is an approach which is important and worth doing further work on. But we need to be very alert to its limitations and how it can be misinterpreted.
PS Related posts on this site:
- Do we get the health research we need?
- Adding value in research: reducing waste and avoiding fraud
- The evidence base for child health in UK primary care