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What was the research about?

Knowing how people view the quality of their care may help doctors improve the care they provide. In this study, the research team wanted to improve care for people with significant physical disability or serious mental illness.

People with disability worked with the research team to create two approaches to convey information about people’s perceptions of the quality of their care to doctors:

• YESHealth. YESHealth is a program led by disability advocates where those advocates identified concerns people with disability have about their healthcare quality. As part of YESHealth, disability advocates created surveys on different quality concerns. People with disability filled out the surveys every three months. The advocates prepared reports with survey results and recommendations for doctors. The advocates then contacted doctors to try to set up in-person meetings to discuss the results.
• The Persons with Disabilities Quality Survey, or PDQ-S. PDQ-S included questions about daily life, independent living, and experiences with primary care doctors. People with disability filled out the PDQ-S. The research team sent the results of the PDQ-S by mail to doctors.

The research team wanted to learn whether either approach would improve experiences of care.

What were the results?

Neither approach improved people’s experiences of care.

But YESHealth didn’t happen as planned. When the advocates reached out to doctors directly, the doctors didn’t agree to meet in person.

Who was in the study?

The study included 27 doctors’ offices in Massachusetts. Each office had at least 50 patients enrolled in One Care. One Care is a health insurance program for people with disability ages 21–64 who qualify for both Medicare and Medicaid.

What did the research team do?

The research team assigned doctors’ offices to one of three groups by chance. Each group included nine offices. The team sent one of the following to individual doctors at each office:

• YESHealth reports once every three months during the year the study took place and the PDQ-S report at the beginning of the year the study took place. The disability advocates also tried contacting doctors to talk about the results.
• The PDQ-S report only, and only at the beginning of the year
• No reports

The team then compared the results of the PDQ-S survey before YESHealth with results from a second PDQ-S survey after YESHealth ended. The team looked for differences in patients’ experiences of care across the three groups.

What were the limits of the study?

Doctors didn’t agree to meet with disability advocates. Results of this study might have been different if the advocates and doctors talked about the reports together.

Future research could look at the reasons the disability advocates had trouble getting doctors to be willing to discuss experiences of care directly with them.

How can people use the results?

The approaches in this study didn’t improve care for people with significant physical disability or serious mental illness. But the PDQ-S developed for this study may be helpful in other research.

Objective

To determine if providing primary care clinicians with information about quality of care reported by people with significant physical disability or serious mental illness improves such patients’ perceptions of their care

This randomized controlled trial included 27 primary care practices in Massachusetts. Each practice served 50 or more One Care members with significant physical disability or serious mental illness. One Care is a health insurance program in Massachusetts for persons who are dually eligible for Medicare and Medicaid and who are ages 21 to 64. Researchers tested the effect of two initiatives reporting patients’ perceptions of care to primary care practices:

• YESHealth. This one-year initiative aimed to engage physicians in discussing healthcare quality directly with One Care members with significant physical disability or serious mental illness. To gather information, disability advocates designed brief quarterly surveys about topics important to One Care members, including care plans and care teams, communication, long-term services and supports, and transportation. Disability advocates developed quarterly one-page summaries of YESHealth survey responses along with recommendations for improving care.
• Persons with Disabilities Quality Survey (PDQ-S). People with significant physical disability or serious mental illness joined with researchers to develop and validate the PDQ-S, which the researchers then administered to One Care members prior to the start of YESHealth. A report from these PDQ-S baseline findings included three domains: independent living principles, perceptions of experiences and feelings about daily life, and perceptions of experiences with primary care clinicians.

The research team administered the PDQ-S at baseline to a group of 720 patients with One Care who received care at the primary care practices in the study. Twelve months later, the researchers administered the PDQ-S a second time, with significant overlap with the first set of respondents, to assess changes in One Care members’ perceptions of care.

Researchers assigned each of the 27 practices to one of three groups by chance. Each group included nine practices.

• YESHealth plus PDQ-S results were sent to individual physicians in each of the nine practices in the first group. In addition, disability advocates reached out to practices to try to engage physicians in discussing the YESHealth survey results.
• PDQ-S results only were sent to individual physicians in each of the nine practices in the second group.
• Control. Researchers did not send any reports to physicians at practices in the third group.

Results

From baseline to 12-month follow-up, patients’ perceptions of care did not show more improvement at the practices that received either both the YESHealth and PDQ-S reports or only the PDQ-S report as compared with primary care practices that received no reports.

However, despite extensive outreach efforts by disability advocates, physicians in the nine practices assigned to YESHealth did not respond to these individuals’ requests to discuss One Care quality as planned. Researchers mailed both the YESHealth and PDQ-S reports to these doctors’ offices instead.

Limitations

Physicians did not respond to the disability advocates’ requests to discuss YESHealth results. Because researchers could not confirm if the physicians in the study reviewed the reports, researchers could not determine whether physicians found consumer-generated information to be helpful in efforts to improve care.

Conclusions and Relevance

Providing reports of patient experience data to primary care practices did not improve patients’ perceptions of care in this study. However, disability advocates were not able to engage with physicians as originally planned.

Future Research Needs

Future research could examine why physicians did not agree to meet with disability advocates. Studies could also consider other ways to engage physicians in improving care quality for patients with significant physical disability or serious mental illness.