Is academia meeting the needs of non-academic users of the results of research?

Abstract

Background Medical and public health researchers often assume that their work will be relevant to patients, health professionals, policy makers, the public, and other non-academic users of research. However, on the basis of little available evidence, serious mismatches exist between what researchers do and what many non-academic users of research feel they need. Research agendas are determined by the priorities of research sponsors, academia, and academic researchers, and cannot be assumed to match the needs of non-academic users of research. The result is that much research is aimed at addressing questions that are of little or no interest to the potential users of research. Although many examples exist of the prioritisation of research in which only patients or health professionals are involved, formal processes in which these individuals and carers work together to agree about which inadequately addressed questions should be priorities for research seem to be rare. The James Lind Alliance (JLA) is an example of an initiative that meets this description. We investigated the prioritised research themes emerging from the JLA Priority Setting Partnerships. Methods We reviewed themes that emerged from the JLA Priority Setting Partnerships for asthma, incontinence, vitiligo, eczema, stroke, prostate cancer, schizophrenia, aspects of balance, and type 1 diabetes mellitus. Findings Priority themes for research that emerged from the JLA Priority Setting Partnerships include emphasis on the need to assess long-term effects (wanted and unwanted) of treatments; safety and adverse effects of treatments; effects of complementary and non-prescribed treatments; and the effectiveness and safety of self-care. Interpretation Invitation for non-academic users of research to identify research priorities seems to lead to research questions that differ importantly from the focus of much of the current health research. The public ends up providing the resources to support academia's involvement in research. Therefore, researchers need to consider their responsibilities to take account of the needs of public and other users of research and ask themselves what they are doing to ensure that they are meeting these needs. Furthermore, non-academic users of research need to engage with the research community to encourage research that addresses their needs. To help non-academic users, we are assembling and developing educational resources in English, Arabic, and other languages. Funding National Institute for Health Research.