PHILADELPHIA — The Perelman School of Medicine at the University of Pennsylvania has been awarded $1.5 million by The Patient-Centered Outcomes Research Institute (PCORI) to launch the Mrs. A and Mr. B Project to study health care disparities among people with disabilities. A collaborative research effort with Virtual Ability, Inc., the study aims to provide patients with information that will help them make more informed decisions about their medical care.
"Those of us who have serious disabilities have even greater health care needs," said the study's principal investigator, Margaret G. Stineman, MD, professor of Physical Medicine and Rehabilitation and Epidemiology, who has been disabled since birth. "We face overwhelming barriers to accessing even the most basic of health care services. It's about time we went to the source and asked this population to tell us how to make health care better for them. I'm so excited about this innovative project because it uses a virtual world as a venue for ensuring communication with people whose disabilities can restrict their movements in the physical world and whose voice might otherwise not be heard."
The Mrs. A and Mr. B Project proposes to clarify health care disparities experienced by adult Medicare beneficiaries in the US. While many previous studies point to ethnic, economic, and education-related disparities in health care access, little is really known about the challenges people with disabilities face or why they may be the most vulnerable to adverse medical outcomes. This project will identify the major obstacles to empowerment that the disabled encounter, such as: mobility and transportation restrictions, the lack of telehealth and telemedicine to provide increased access to care, and insensitive health care personnel untrained to the needs of people with disabilities.
The Project name – Mrs. A and Mr. B – is a play on patient anonymity and intended to represent all people whose disabilities make them vulnerable to health care inequalities. "Our hope is that the project will promote empowerment and self-direction by providing better information for people with disabilities and also by demonstrating the importance of self-advocating for better access and higher quality care," said Stineman.
Stineman and colleagues will work toward these goals through collaboration with Virtual Ability, Inc., a non-profit corporation that enables people with wide ranges of disabilities by providing them with online tools to function in virtual worlds. It is with the use of Virtual Ability that Stineman and colleagues will be able interact with their study participants and collect data.
"It is an honor for our community members to be part of this research team," said Alice Krueger, president of Virtual Ability, Inc., who has a progressive disability. We look forward to not only providing valuable information, but also to having a part in collecting and interpreting that data. This is a new role for persons with disabilities."
The Mrs. A. and Mr. B Project applies community-based participatory research to ensure equal participation of patient stakeholders and clinician scientists through the integration of quantitative and qualitative research methods. Input from study participants will provide the basis for the data collected. "Patients are at the center of everything health providers do, therefore, it is essential to ask people with disabilities to help address and guide how health care should be delivered to them," said Stineman.
In addition, thousands of surveys from Medicare beneficiaries will be analyzed to see if there is evidence that people who experience better access to care believe they receive higher quality care – and thus, give their providers higher ratings and ultimately, have comparatively better outcomes. "We anticipate that those who have better access to care will be less likely to have onset or progression of disabilities, be more able to avoid nursing home placement, and will survive longer," said Stineman.
The Penn Medicine study is one of 51 projects to receive funding from PCORI over a three-year period.
Dr. Stineman receives no financial compensation from Virtual Ability, Inc.