Abstract
Plain English summaryAs 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.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.
Highlights
Creating and enhancing value within the Research and Development (R and D) process through the reduction of waste has been a recurrent theme in health research as illustrated by the Lancet series of articles in 2009 and 2014 and more recent publications in 2016
The waste is judged to be attributable 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. 50% of registered clinical trials were not published in full; 50% of published reports did not fulfil the criteria for clear, accurate and complete reporting; 50% of new studies failed to take into account evidence and results from previous research
Other categories of potential research waste that were identified included a lack of patient and public involvement and engagement (PPIE) in setting priorities, poor use of inter-disciplinary collaboration and University on-costs
Summary
Creating and enhancing value within the Research and Development (R and D) process through the reduction of waste has been a recurrent theme in health research as illustrated by the Lancet series of articles in 2009 and 2014 and more recent publications in 2016. The waste is judged to be attributable 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. 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. As part of a wider programme of work on reducing waste in health and care, a review of the literature on waste in healthcare [10, 11], found waste in research was listed amongst the main categories of waste in health care expenditure and could be identified in a number of areas including: Prioritisation of research; Assessment of evidence;
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