Text transcripts of all focus group sessions were de-identified of HIPAA-protected data before secure transmission to the analysis team at the University of Pennsylvania. All Virtual Ability staff are CITI ethics trained and certified.
The three-year project started in August 2013, and is now completed. The purpose of the focus group sessions was to aid in interpretation of statistical research. Initial findings indicated several emerging themes, including the importance of self-advocacy, a concern about the impersonal and rushed nature of interactions with primary care physicians, and most prominently, observations that providers are not communicating with each other about their common patient’s care.
The project website, developed and maintained by Virtual Ability, Inc., included sections for researchers and for the general public. The latter, written by Virtual Ability staff in language that is easily comprehended by non-scientists, explained the research process as well as emerging results. A public forum encouraged everyone to respond to questions related to the research. A portion of the website also addressed the needs of clinicians who work with patients who have disabilities.
A published paper, “Patient Satisfaction and Perceived Quality of Care Among Older Adults According to Activity Limitation Stages,” offers emerging quantitative findings from this project.
Alice Krueger, president of Virtual Ability, Inc., notes, “One exciting aspect of this project – and one that directly led to the project winning funding from PCORI – is that many aspects of the work, such as data de-identification and focus group facilitation, are being done by people with disabilities. Virtual Ability is able to bring together people with disabilities both as participants in research and as trained project staff.”
Sister Patrice Colletti, SDS, project director for Virtual Ability, Inc., states, “It has been exciting to involve consumers of healthcare- people with and without disabilities- in directly designing, implementing, and providing data for this research. This project welcomes and integrates insights and ideas from these experts in receiving healthcare. Together, we bring a critical and too-often overlooked perspective to the national healthcare dialogue. Working with our colleagues at the University of Pennsylvania School of Medicine, we are engaging and leveraging expertise from every angle. This is powerful.”
Hillary R. Bogner, MD MSCE, Associate Professor at the University of Pennsylvania, explains, “We worked with Virtual Ability, Inc. as a team dedicated to eliminating disparities in health services related to disability. Our goal was to enhance the understanding and empowerment of populations of people with disabilities. The burden imposed by disability on the population at large will be extreme in the coming decades. Virtual Ability, Inc. empowers and helps persons with disabilities move beyond the barriers separating them from the larger society. People come from many diverse cultures across the age spectrum, and frequently share innovative grassroots solutions to living autonomously, making Virtual Ability, Inc. ideal for community-engaged research. For our project, Virtual Ability, Inc. governed and directed administration of qualitative procedures and data collection within Second Life. Through its existing infrastructure and extensive network of volunteers, the community within Virtual Ability serves as a groundbreaking platform for community-engaged research. Virtual Ability, Inc. continues to help us disseminate our findings on how people with disabilities face accessibility barriers particular to their conditions. Together with Virtual Ability, Inc., we can make a difference.”