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SMARTER (Study of Methods for Assessing Research Topic Elicitation and pRioritization)
Investigator (PI): Lavallee, Danielle
Performing Organization (PO): (Current): University of Washington, School of Medicine, Department of Surgery, Division of General Surgery / (206) 543-3680
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2014
Final Year: 2018
Record Source/Award ID: PCORI/ME-1310-07328
Funding: Total Award Amount: $993,765
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Background: 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. Objectives: 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 two-fold, 1) to 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; and 2) to 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, and disability) influence participation in research activities. Methods: We propose a three-year, two-phase study. In the first phase, patients in the Back pain Outcomes using Longitudinal Data--Extension of Research (BOLDER) registry project, a patient 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. Patient outcomes (projected): Our primary outcome is the difference in the top five priorities generated by each activity. We will also utilize patient-reported satisfaction as an important outcome to compare different prioritization methods. Finally we will compare characteristics of patients participating (and not participating) in each of the research prioritization activities. These outcomes will help to inform investigators and patients about the comparability of different prioritization methods.
MeSH Terms:
  • Aged
  • Back Pain
  • Disabled Persons
  • Female
  • Focus Groups
  • Health Services Research /*methods
  • Humans
  • Internet
  • Male
  • Outcome Assessment, Health Care
  • * Patient Participation
  • Patient Satisfaction
  • Patient-Centered Care
  • Registries
Country: United States
State: Washington
Zip Code: 98195
UI: 20152274
Project Status: Completed
Record History: ('2017: Project extended to 2018 and Title changed. Previous Title: Comparing engagement techniques for incorporating patient input in research prioritization',)