Results Summary

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.

Final Research Report

View this project's final research report.

More About This Research

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also confirms that the research has followed PCORI’s Methodology Standards. During peer review, experts who were not members of the research team read a draft report of the research. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. Reviewers do not have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve how the research team analyzed its results or reported its conclusions. Learn more about PCORI’s peer-review process here.

In response to peer review, the PI made changes including

  • Reorganizing the report because reviewers suggested the original structure of the report detracted from the interesting story the research had to tell.
  • Expanding the presentation of the YESHealth intervention as well as the conceptual model. The researchers noted that the conceptual model is about how health care affects wellness and quality of life of people with disability, rather than a model intended only for this study’s intervention.
  • Incorporating the description of the participation of patients and stakeholders throughout the report because of the foundational role of the disability community in helping develop the intervention.

Conflict of Interest Disclosures

View the COI disclosure form

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also confirms that the research has followed PCORI’s Methodology Standards. During peer review, experts who were not members of the research team read a draft report of the research. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. Reviewers do not have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve how the research team analyzed its results or reported its conclusions. Learn more about PCORI’s peer-review process here.

In response to peer review, the PI made changes including

  • Reorganizing the report because reviewers suggested the original structure of the report detracted from the interesting story the research had to tell.
  • Expanding the presentation of the YESHealth intervention as well as the conceptual model. The researchers noted that the conceptual model is about how health care affects wellness and quality of life of people with disability, rather than a model intended only for this study’s intervention.
  • Incorporating the description of the participation of patients and stakeholders throughout the report because of the foundational role of the disability community in helping develop the intervention.

Conflict of Interest Disclosures

Project Information

Lisa I. Iezzoni, MD
Massachusetts General Hospital
$2,019,733
10.25302/2.2019.IHS.130601424

Key Dates

42 months
December 2013
May 2018
2013
2018

Study Registration Information

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Last updated: October 20, 2021