Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER)
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 was to inform researchers how surveys, focus groups, and online methods compare for involving patients 65 years and older in research prioritization activities. The objectives of this project were twofold:
- Evaluate how patient engagement methods (mailed questionnaires, focus groups, and online crowd-voting) compare in producing similar research priorities, participant satisfaction, and time and cost to implement
- Determine if patient demographics (e.g., age, gender, ethnicity/race, education) and disease severity (e.g., duration of low-back pain, patient reported measures of pain, disability) influence participation in research activities
This three-year study was conducted in two phases. In the first phase, patients in the Back pain Outcomes using Longitudinal Data (BOLD) registry project, a registry consisting of approximately 3,000 patients aged 65 years and older with back pain, received a mailed invitation to provide input on priorities for research through a paper-based questionnaire. In the second phase, we invited 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 assessed differences in the top five priorities generated by each approach. Additionally, we assessed participant satisfaction with the experience through questionnaires and interviews.
The final study results report is still being written and will be posted here when complete. Join our newsletter email list to be notified when the study results are posted.
Study publications to date:
- Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER): Study Protocol to Compare Qualitative Research Methods and Advance Patient Engagement in Research (published in JMIR Research Protocols, September 2017)
- Prioritizing Research Topics: a Comparison of Crowdsourcing and Patient Registry (published in Quality of Life Research, April 2017)
- The Promise and Pitfalls of Using Crowdsourcing in Research Prioritization for Back Pain: Cross-Sectional Surveys (published in JMIR, October 2017)
Results reports to participants: