Background

In October 2013, Massachusetts initiated the One Care demonstration, which enrolls beneficiaries ages 21 to 64 dually-eligible for Medicare and Medicaid. Local disability advocates argued that persons with disability should assess their own One Care quality.

Objectives

To test the comparative effectiveness for improving patient-reported health care experiences of two informational interventions in a 12-month period: (1) “YESHealth: Your Experience, Speak up for better health care,” in which disability advocates developed brief topical surveys and gathered information from One Care enrollees with significant physical disability or serious mental illness; and (2) the Persons with Disability Quality Survey (PDQ-S), developed collaboratively with persons with disability.

Methods

This cluster randomized controlled trial randomly assigned 27 primary care practices with ≥ 50 One Care members to three study arms differing by information provided to practice directors and primary care providers (PCPs): (1) quarterly YESHealth reports plus results from baseline administration of PDQ-S to 720 enrollees before YESHealth implementation; (2) PDQ-S results only; and (3) no study information. We administered PDQ-S again one year later and used difference-in-differences analyses of results across the two years to assess intervention outcomes.

Results

Disability advocates conducting YESHealth reported substantial difficulties contacting practices and engaging PCPs. With few exceptions, no differences were found across the three study arms in enrollee-reported outcomes.

Conclusions

Providing consumer-designed and generated quality information to PCPs had no measurable effect on enrollees’ perceptions of One Care quality. Barriers to PCPs engaging with disability advocates could have contributed to YESHealth’s failure to improve care.