Abstract
BackgroundPublic sources fund the majority of UK infection research, but citizens currently have no formal role in resource allocation. To explore the feasibility and willingness of citizens to engage in strategic decision making, we developed and tested a practical tool to capture public priorities for research.MethodA scenario including six infection themes for funding was developed to assess citizen priorities for research funding. This was tested over two days at a university public festival. Votes were cast anonymously along with rationale for selection. The scenario was then implemented during a three‐hour focus group exploring views on engagement in strategic decisions and in‐depth evaluation of the tool.Results188/491(38%) prioritized funding research into drug‐resistant infections followed by emerging infections(18%). Results were similar between both days. Focus groups contained a total of 20 citizens with an equal gender split, range of ethnicities and ages ranging from 18 to >70 years. The tool was perceived as clear with participants able to make informed comparisons. Rationale for funding choices provided by voters and focus group participants are grouped into three major themes: (i) Information processing; (ii) Knowledge of the problem; (iii) Responsibility; and a unique theme within the focus groups (iv) The potential role of citizens in decision making. Divergent perceptions of relevance and confidence of “non‐experts” as decision makers were expressed.ConclusionVoting scenarios can be used to collect, en‐masse, citizens' choices and rationale for research priorities. Ensuring adequate levels of citizen information and confidence is important to allow deployment in other formats.
Highlights
Between 1997 and 2010 £1.4 billion of public funds were invested in infection research in the United Kingdom (UK)[1] comprising the major source of funding (54% of the overall funding)
Despite the majority of funding coming from public sources, UK citizens currently have no formal role in determining where or how this money is invested within this field of research
The Health Research Authority (HRA) in the UK has set out clear aims and objectives for involving patients and the public in the research process, setting out a clear mandate for improving patient and public involvement (PPI) directly in research.[2]
Summary
Between 1997 and 2010 £1.4 billion of public funds were invested in infection research in the United Kingdom (UK)[1] comprising the major source of funding (54% of the overall funding). To test the feasibility of partnering citizens in priority setting, there first of all needs to be a clear and validated method for informing and involving a large number of citizens in the decision process This must take into account many of the common issues associated with researcher engagement with patients and the public and sharing decision making across research and health care.[10,11,12,13] An important contextual factor for any PPI activity is the health literacy of the population; in the UK for example, approximately 43% of citizens require assistance in understanding written health information.[10,14,15] This means that as well as ensuring that issues of access and participation are addressed on a logistical level, involvement at the strategic level runs the risk of tokenistic or technocratic involvement, if methods are not fit for purpose.[16,17,18] Citizens must have time and space to express their information needs and levels of confidence when asked to participate in decision-making processes. We set out to develop a tool and test its feasibility as part of a reproducible methodology capable of exploring citizen priorities for infection research from a large population sample, with the potential to inform priorities across research programmes
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