One defining element of patient-centered outcomes research is that the patient voice is represented. By including this perspective as part of research priority-setting activities, questions of greatest importance to patients are recognized and incorporated into future research agendas. Surveys, focus groups, and online crowdsourcing are approaches described for obtaining patient input for research activities. Little is known, however, about how these different approaches produce comparable or similar lists of priorities. Further, there is an opportunity to understand how patients wish to be involved. Because these methods are increasingly applied in research, it is important to understand the strengths and limitations of each approach.
The overarching goal of this project is to inform researchers on how surveys, focus groups, and online methods compare for involving patients 65 years and older in research prioritization activities. The objectives of this project are twofold:
This three-year study will be conducted in two phases. In the first phase, patients in the Back pain Outcomes using Longitudinal Data registry project, a registry consisting of approximately 3,000 patients aged 65 years and older with back pain, will receive a mailed invitation to provide input on priorities for research through a paper-based questionnaire. In the second phase, we will invite interested respondents to continue participation in one of three interactive activities: an in-person focus group, a two-part mailed questionnaire, or an online crowd-voting community to rank research topics. We will assess differences in the top five priorities generated by each approach. Additionally, we will assess participant satisfaction with the experience through questionnaires and interviews.