Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons” (MIC). We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.
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References
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The classic work on engagement as a continuum is K.L.Carmanet al., “Patient and Family Engagement: A Framework for Understanding the Elements and Developing Interventions and Policies,”Health Affairs32, no. 2 (2013): 223-229 (focus on health care context). An engagement “roadmap” building on this framework is available at <https://patient-familyengagement.org> (last visited January 10, 2019). See also Ellis and Kass, supra note 5; Aungst, Fishman, and McGowan, supra note 6; M. Seid, P.A. Margolis, and L. Opipari-Arrigan, “Engagement, Peer Production, and the Learning Healthcare System,” JAMA Pediatrics 168, no. 3 (2014): 201-202; T. Nabatchi, “Putting the ‘Public’ Back in Public Values Research: Designing Participation to Identify and Respond to Values,” Public Administration Review 72, no. 5 (2012): 699-708. The continuum is critical to understanding the relationship between participant engagement and participant-centricity. While a project can employ limited participant engagement strategies without being participant-centric if these strategies in no way meaningfully empower participants, as one moves along the participant engagement continuum initiatives become increasingly participant-centric. It is hard to imagine an initiative that claims to be participant-centric having no participant engagement.
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Regarding the general need to attend to intersectionality, including the interaction of race and gender in the experience of discrimination, see the work of Kimberlé Crenshaw, e.g., K.Crenshaw, “Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics”University of Chicago Legal Forum1989, no. 1 (1989), Article 8, available at <http://chicagounbound.uchicago.edu/uclf/vol1989/iss1/8> (last visited January 10, 2019). Regarding intragroup differences and tensions in the context of research in particular, see Reardon, p. 195, Jongsma, Spaeth, and Schicktanz, supra note 12, Kaplan et al., supra note 7.
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26.
For example, an analysis carried out in the context of the Clinical Trials Transformation Initiative captures impacts of patient engagement in clinical trials such as avoiding protocol amendments and/or improving enrollment, adherence, and retention, and potential financial impact. B.Levitanet al., “Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI's Patient Groups and Clinical Trials Project,”Therapeutic Innovation & Regulatory Science52, no. 20 (2017): 220-229, available at <http://journals.sagepub.com/doi/full/10.1177/2168479017716715> (last visited January 10, 2019).
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For information on one model that has been extensively tested, see Y.A.Joostenet al., “Community Engagement Studios: A Structured Approach to Obtaining Meaningful Input from Stakeholders to Inform Research,”Academic Medicine90, no. 12 (2015): 1646-1650; A. P. Boyer et al., supra note 25.
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