Exploring Consumer Engagement Experiences: A Research Project Co-Led by the National Consumer Scholars

Evelyne Kane
Danielle Hodges
Olivia Richard
Stephanie Burdick
Suzette Shaw
April 2021
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Consumers and staff members of health and social service organizations share their community engagement experiences, offering insights from the field, including design and implementation recommendations for community engagement activities. 


Community engagement within a health care context encompasses a wide range of activities and desired outcomes. This survey study investigated the perspectives of both consumers and staff of health and social service organizations involved in community engagement work. The survey was co-designed by staff at the Camden Coalition and members of the National Consumer Scholars program — a cohort of individuals with first-hand experience living with or caring for someone with complex health and social needs, experience with systems-level transformation, or involvement with an organization that provides complex care or advocacy.


Survey respondents described their involvement in a range of community engagement activities, which mostly centered around community members sharing their experiences and perspectives with policymakers and other health care-related decision-makers. Both consumers and staff respondents emphasized the importance of community engagement activities being mutually beneficial. The potential benefits to consumers participating in community engagement activities include opportunities to build relationships, gaining insights into health care access barriers, financial incentives, and personal and professional development.

Respondents also highlighted the critical role of demonstrating that feedback leads to tangible changes. Staff respondents shed light on challenges in recruiting participants, citing a lack of interest and skill gaps among individuals. The report offers recommendations to mitigate some of these challenges, including improving transportation and technology access and providing opportunities for skill development through internal and external resources.


The insights and recommendations presented in this report, shaped by survey findings and the experiences of the National Consumer Scholars cohort, offer valuable guidance for health care organizations aiming to implement or expand community engagement efforts. The authors note a lack of community engagement activities focused on solution-oriented work reflected in the survey responses. This reflects an opportunity to deepen community engagement efforts, particularly given research demonstrating the benefits of such initiatives. Since this report was published, promising examples have emerged of community engagement efforts involving shared decision-making, including through county public health initiatives and Medicaid advisory committees.

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