Description of YESHealth: A consumer-directed intervention in a randomized trial of methods to improve quality of care for persons with disability

Abstract

Background: Persons leading their own evaluations of care quality offers the promise of generating maximally meaningful information to ensure person-centered care.

Objectives: To describe an intervention where persons with disability engage other persons with disability, develop their own metrics to assess their care, and provide these care evaluations directly to primary care practitioners, with the goal of improving care. The context was a research study involving One Care, a Massachusetts demonstration program with capitated reimbursement for individuals ages 18-64 dually eligible for Medicare and Medicaid.

Methods: Individuals with serious mental illness or significant physical disability designed and implemented "YESHealth: Your Experience, Speak up for better health care." To solicit and communicate with YESHealth members, they mailed postcards announcing YESHealth to potential participants, created a website, sponsored a Facebook group, and staffed telephones in English and Spanish. YESHealth also involved reaching out to numerous disability advocacy organizations, developing and conducting short quarterly surveys about quality concerns they identified, and reporting survey results to YESHealth members and their primary care practitioners.

Results: Over 12 months, YESHealth staff visited 60 community organizations to recruit participants. Recruiting participants was challenging and ultimately required offering monetary compensation. Participants preferred telephone to online communication. Efforts to engage targeted primary care practitioners had very limited success.

Conclusions: Despite these challenges, YESHealth represents a unique model for consumers' voices to try to affect change in care delivery. A randomized trial has evaluated whether the YESHealth intervention affected care quality for One Care members with disability.

Keywords: Community-based participatory action research; Disability; Evaluating quality; Person-centered care; Quality of care.