Patient and public involvement in reducing health and care research waste

PLAIN ENGLISH SUMMARY: As much as 85 % of health research is believed to be wasted because it is not published or reported, the design is poor or does not consider what is already known in the topic area. Although a great deal of work has been done in the UK to reduce research waste, the role of patients and the public has not been discussed. This paper describes a survey, on the role of patients in reducing research waste, which was carried out as part of a larger piece of work on reducing waste in healthcare. The study found that patients were interested in reducing research waste. The key roles they play in research, for example being co-applicants for funding, members of project teams, co-researchers, means they have some shared responsibility for making sure the quality of research is high. This includes finding out what is already known about a topic and getting the study design right before seeking funding, publishing and reporting the results when the study is finished. Recognising where waste happens is part of good management of a research study. ABSTRACT: Background Eighty five per cent of health research expenditure is potentially wasted due to failure to publish research, unclear reporting of research that is published, and the failure of new research studies to systematically review previous research in the same topic area, poor study design and conduct. A great deal of progress has been made to address this issue but the role of patients and the public has not been considered. Main A small survey was undertaken, as part of a larger programme of work on reducing health and care waste, to understand the role of patients in reducing research waste. The study showed that patients are interested in this issue particularly in relation to the prioritisation of research and patient and public involvement. Conclusions Patients undertake key roles in the research process including co-applicancy, project management, or as co-researchers. This brings responsibility for ensuring high quality research and value for money. Responsibility for recognition of the potential for wasteful practices is part of the conduct and operation of research studies.