Public Involvement in Setting a National Research Agenda

Background: A growing body of literature supports the inclusion of patients, other service users, and the wider public in guiding health technology assessment, particularly in relation to interventions and outcomes for evaluative studies.

Objective: To describe the input and influence of public involvement in setting the agenda for a national research program.

Methods: The data source was the commissioned research of the UK National Health Service Health Technology Assessment (HTA) program, 1999–2004. The study consisted of a mixed methods evaluation employing document analyses, key informant interviews, and structured non-participant observations. Routine management records of the HTA program were examined for public influence on research topics. The nature and influence of contributions from the public were compared with those of other experts. Structured observations of advisory panel meetings investigated how discussion and decisions related to patient and public perspectives and how panel members responded to public input to the program. Semi-structured interviews gathered the perceptions of staff and advisory panel members.

Results: The public provided unique contributions both as external experts and as panel members. The value and influence of many of these contributions were acknowledged by staff and panel members. Input from external public experts was least where recruitment was passive (through a website) and where contributions were required in a research question format that may have been unfamiliar to non-researchers. However, public influence at this stage was at least of the same order as that of professional suggestions. Input was most where recruitment effort was greater, where contributions could be made in an open format, and where the responsibility for integrating these into a research question format lay with research program staff. Public experts contributing at this stage often influenced research plans. Their contributions resulted in some important changes, including making patient and carer perspectives explicit, changing the focus of the research, adding new outcomes, refuting the need for the planned research, providing up-to-date prevalence data, and providing plain English background text. At their best, public members of advisory panels were seen as providing useful comment and encouraging greater sensitivity to patient perspectives among other panel members. At their worst, they were seen as lobbying for particular patient groups.

Conclusions: Public involvement has influenced decisions about research commissioned by the HTA program with only relatively minor changes to the procedures and resources for managing the program required. This results in outcomes research that incorporates patient and public preferences and values, and that is freely available for evidence-informed health services.