Setting stroke research priorities : the consumer perspective

Objectives: To test a method of engaging consumers in research priority-setting using a quantitative approach and to determine consumer views on stroke research priorities for clinical practice recommendations with lower levels of evidence (Level III and Level IV) and expert consensus opinion as published in the Australian stroke clinical practice guidelines. Design: Survey. Setting: Urban community. Subjects: Eighteen stroke survivors (n = 12) and carers (n = 6) who were members of the "Working Aged Group - Stroke" (WAGS) consumer support group. Main outcome measures: Phase I: Participants were asked whether recommendations were "worth" researching ("yes" or "no"); and, if researched, what potential impact they likely would have on patient outcomes. Phase II: Participants were asked to rank recommendations rated by more than 75% of participants in Phase I as "worth" researching and "highly likely" or "likely" to generate research with a significant effect on patient outcomes (n = 13) in order of priority for future stroke research. Results: All recommendations were rated by at least half (n = 9, 50%) of participants as "worth" researching. The majority (67% to 100%) rated all recommendations as "highly likely" or "likely" that research would have a significant effect on patient outcomes. Thirteen out of 20 recommendations were ranked for their research priorities. Recommendations under the topic heading Getting to hospital were ranked highest and Organization of care and Living with stroke were ranked as a lower priority for research. Discussion/Conclusion: This study provided an example of how to involve consumers in research priority setting successfully using a quantitative approach. Stroke research priorities from the consumer perspective were different from those of health professionals, as published in the literature; thus, consumer opinion should be considered when setting research priorities.