TABLE 4-1The Range of Engagement in the Return of Individual Research Results

STAKEHOLDER ROLEEXTENT/DEPTH OF ENGAGEMENTBRIEF DESCRIP TIONEXAMPLES/METHODSNUMBER OF STAKEHOLDERS IN ROLE
Principal Investigator (PI) or Co-PIResponsible for decision makingStakeholders drive the research and serve as leaders or co-leaders of the project. They are responsible for all aspects of the study and are directly involved in all decision makingPartnered research (multiple PIs), community-based participatory research, patient powered research network1–2
Research Partner or Team MemberPart of team making decisionsStakeholders are members of the research team and have direct involvement in the design, conduct, and dissemination of research; including helping to understand and make decisions on the return of research resultsCommunity-engaged research, engaged team science2–6
Governance or Advisory GroupProvides oversight or guidance to make decisionsStakeholders consider feedback and findings on participants' needs, priorities, and values and provide guidance to the research team to make decisions on the return of research resultsAdvisory boards, councils and committees4–25
Consultants, Interviewees, Panelists, Reviewers, etc.Provides detailed input on participant needs, preferences and valuesStakeholders serve in specific, time-limited roles and provide detailed input on participants' needs, preferences, and values on the return of research resultsFocus groups, semi-structured interviews, Delphi techniques, community engagement studios10–100
Knowledge Users and Experiencers (general population affected by condition being studied)Provides input on participant needs, preferences and valuesStakeholders engage using methods designed to reach a large number of people and provide perspectives on participants' needs, preferences, and values related to return of research resultsSurveys, online polling, crowdsourcing, social media, town hall meetings100+

From: 4, Processes to Enable Appropriate Decision Making Regarding the Return of Individual Research Results

Cover of Returning Individual Research Results to Participants
Returning Individual Research Results to Participants: Guidance for a New Research Paradigm.
National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Sciences Policy; Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories; Downey AS, Busta ER, Mancher M, et al., editors.
Washington (DC): National Academies Press (US); 2018 Jul 10.
Copyright 2018 by the National Academy of Sciences. All rights reserved.

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