Virtual Ability are seeking volunteers (primarily in the United States) to help with a nationwide healthcare research project.
The research, which is being carried out in conjunction with the University of Pennsylvania Perelman School of Medicine, is intended to assess the level of access to quality healthcare people with disabilities have in the US, with a focus on determining if people with disabilities who get better healthcare stay healthier and are able to live independently longer than do those who get lower quality healthcare. A unique part of the study is that not only are people with disabilities providing data for the researchers, but some people with disabilities will be involved as members of the research team.
The study will run for three years, and will involve research into quantitative and qualitative care:
- The quantitative portion of the study will yield findings about how access and healthcare quality, as perceived by thousands of Medicare beneficiaries of all ages, impacts the progression of their disabilities and their survival
- The qualitative portion of the study will be conducted in an urban setting in Wisconsin and also in Second Life. It will use Focus Groups that provide a “voice” to the general public with the aim of revealing relationships among quality of health care and access to high quality healthcare for persons at varying levels of impaired function and disability.
Second Life users, disabled and able-bodied, are being invited to be a part of a Focus Group within the qualitative portion of the study. In all, there will be three types of Focus Group: people with a disability or their proxies; people without disabilities; and clinicians; volunteers are being sought to participate in all three.
Those joining a Focus Group will be asked to participate in a variety of activities, some of which will be limited to just a few people at a time while others will be open to the general public. A commitment to the full three years of the study is not required; anyone wishing to withdraw from the study can do so any time in the process.
Volunteer Involvement
Second Life users wishing to volunteer to be a part of a Focus Group must:
- Be a US citizen (non-citizens can participate in other ways)
- Be a person 21 years of age or older
- Have at least 3 months of experience in Second Life and be able to communicate in text (with ADA accommodations).
In addition, the following criteria also apply to volunteers:
- Those wishing to participate as a person with a disability or their proxy must:
- Be a person with one or more disabilities (physical, mental, emotional, or sensory), OR
- Be a provider of personal care to a person with a disability and serve as their proxy (e.g. sharing their likely opinions or experiences because they are unable to do so directly)
- Non-disabled people wishing to apply must not have a disability at this time AND must be a person who is not caring for a person with a disability at this time
- Clinicians wishing to be a part of the study must be a practicing health professional AND have had clinical experience in the provision of care to people with and without disabilities
If you are willing to participate as a research subject, please send an IM to Sister Abeyante (or email her at sister@virtualability.org), indicating whether you wish to participate as a person with a disability, a non-disabled person or a clinician.
You will receive a consent form (note card) by return with further information on the study.
- Please read through the note card, and feel free to forward any questions you have about the research (and / or the research process, and / or your involvement in the study) using the contact information provided on the note card
- When you are satisfied you are willing to participate in the research, please follow the directions on the note card (typing your name and renaming the note card) and return a copy to Sister Abeyante in-world.
Within a week of returning your consent form, you will receive a unique URL that will allow you to take a demographic survey. This survey will ask you questions about yourself, your health, and your life circumstance. Your responses to this survey will be kept strictly confidential by the University of Pennsylvania.
Within a few months of taking the survey, people will be randomly selected to participate in a private Focus Group meetings which will be held in Second Life, and will discuss a variety of questions of interest to the researchers, including interpretation of statistical results. There will be separate Focus Group meetings for people with disabilities (or their proxies), people without disabilities, and clinicians.
As the study will continue for two additional years, those chosen to join future Focus Groups will be asked to re-sign a consent form ahead of their participation to confirm their continued interest in the research.
Public Involvement
Anybody interested in the topic of healthcare quality, but who does not qualify or does not want to be a research subject can participate in the public portion of the study by:
- Watching the progress of the project at www.HealthcareEquitability.org
- Participating in the discussion of pertinent topics at http://HealthcareEquitability.org/forum/
- Attend research reports by project staff, which will be held in the Research Pavilion on Healthinfo Island, Second Life, and announced in the Second Life Events Calendar.
If you have further questions concerning this study, please contact: Sister Abeyante in Second Life, or email sister@virtualability.org.
For and on behalf of Virtual Ability Inc.
Inara Pey: Living in a Modemworld 