Virtual Ability, Inc. has partnered with the University of Pennsylvania Perelman School of Medicine for the past two years on a major research project titled “>Mrs. A and Mr. B.” In fact, Virtual Ability had been involved in this research even during the brainstorming, proposal writing, and funding seeking phases. The three-year project is sponsored by the Patient Centered Outcomes Research Institute (PCORI). It is a mixed methods research design, with both quantitative (statistical analysis of numerical data) and qualitative (conceptual analysis of non-numerical data) findings.
Who are Mrs. A and Mr. B?
Mrs. A and Mr. B are not real people. They are composite characters, symbolic of people this research project focuses on. They represent people with and without disabilities who use the US healthcare system.
What is the project trying to find out?
We want to know why it is difficult for people with disabilities to get high quality healthcare. We want to know if people get worse care as they become more disabled. We want to find out if people with disabilities who get better healthcare stay healthier and are able to take care of themselves longer.
How are we doing this research?
University of Pennsylvania researchers are analyzing data from thousands of Medicare/Medicaid recipients whose opinions about healthcare were sampled between 2001 and 2010. They use statistics to look for patterns in the data.
Virtual Ability is asking three groups of people for their thoughts on the statistical findings: people with disabilities, people without disabilities, and clinicians, all from the US (so far) due to our funding source. We gather small groups of people together to discuss the emerging research findings. These groups are called focus groups. Most of them meet in Second Life, but there is also a focus group that meets at a community center in Wisconsin. The purpose of adding focus groups to the statistical research is to contextualize findings and translate them into the voice of stakeholders.
We also collect the thoughts of people from all over the world, from many different backgrounds and cultures, on the project Forum.
What is unique about this research project?
Several aspects of this research are unique, in addition to the topic.
Many of the project’s research staff have disabilities. The leaders of the project are people with disabilities. People with disabilities work with people without disabilities as equals. Non-researchers are considered equal partners because they are experts, having lived the experiences they report.
Virtual Ability has trained persons with disabilities to be research staff for this project. All research staff are CITI ethics trained. Virtual Ability employs trained persons with disabilities as focus group facilitators and as data de-identifiers. Focus group facilitators lead and record the discussion among focus group members. Data de-identifiers remove from the transcripts of focus group discussions all personally identifiable data, and transmit the cleaned transcript securely to analysts at the University.
We provide information on the project website for three groups: the general public, other researchers, and clinicians. For the general public, we make sure that all information about the project is reported in easy-to-understand language as well as the academic language of university-based researchers. For researchers, we report our research design and emerging findings. For clinicians, we offer information on how to work with patients who have various kinds of disabilities.
What have we learned so far?
In the first year of the project, we learned that:
- The US healthcare system is fragmented. The various healthcare providers for a single patient do not communicate adequately, so the patient is often responsible for coordinating care.
- Self-advocacy in healthcare is very important, and not every patient is good at it.
- Many clinicians interact in a very impersonal manner that is not appreciated by patients.
In the second year of the project, we followed up on the results of the first year. We learned that:
- Poor healthcare coordination results because Primary Care Providers (PCPs) lack specialized knowledge, while specialists do not have enough general knowledge to consider their patient as a whole person rather than as a set of specific symptoms.
- Electronic health records (EHR) do not seem to be consistently accessed by clinicians, resulting in poor care coordination when a patient has multiple care providers.
- Short provider visits often result in inadequate communication.
- People with communication disabilities (deafness, blindness) often have particularly difficult times in healthcare settings.
- People with and without disabilities expressed frustration with insurance systems and the costs of medical care.
- People with disabilities often face transportation and access issues in obtaining high quality healthcare.
What will we do in 2016?
How can you participate?
Anyone, from anywhere in the world, can join in the project’s online Forum.
If you are already a Second Life resident, please consider volunteering to be part of our inworld focus groups.
Please join us on Friday, Feb. 26, at approximately 9am Pacific (following the 8:30am business meeting of the NonProfit Commons) in Second Life, when Gentle Heron will present a summary of the Mrs. A and Mr. B research and what will occur in the last year of the project.