Virtual Ability, an active Second Life group with over 900 community members are asking for volunteers to help with a nationwide healthcare research project. This is a very exciting opportunity for Second Life residents and this is a great way of showing support for this important project.
Virtual Ability are working with the University of Pennsylvania Perelman School of Medicine in conducting this major national research about access to quality healthcare in the US by people with disabilities.If you are interested in helping in this unique research model, which utilizes the virtual world of Second Life® to offer healthcare consumers in the US (people with disabilities, people without disabilities, and clinicians) a “voice” in the research then see below for more details.
If you have any questions please contact: Sister Abeyante in Second Life, or email sister@virtualability.org.
Dear Colleagues,
We at Virtual Ability, an active SL group ( Gentle Heron is the founder), invite you to participate in the “Mrs. A and Mr. B” research project. Please feel free to pass this notecard on to others you know who might be interested in helping, too.
Virtual Ability, Inc. is working with the University of Pennsylvania Perelman School of Medicine in conducting this major national research about access to quality healthcare in the US by people with disabilities.
This project is innovative in 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.
As you will read below, we are seeking volunteers with and without disabilities, as well as people who are clinicians in medical or related fields, to participate in surveys or a focus group, or to participate online at www.HealthcareEquitability.org.
We hope you can consider assisting, and we hope you pass this on to others who you feel might be able to help, too! Thank you!
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*What the research hopes to achieve:
We already know that, in general, the easier it is for people to get healthcare, the better their health and quality of life is. Also, in general, we know that people who get better healthcare are more able to care for themselves longer than those who receive poorer quality healthcare.
We do not know some things about healthcare for persons with disabilities. We know that it’s not easy for them to get high quality healthcare, but we don’t know why. We want to find out if people get poorer quality 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 live independently longer than do those who get lower quality healthcare.
*How the research will be conducted:
There are 2 parts to the research: a quantitative portion and a qualitative portion.
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. We will conduct Focus Groups that provide a “voice” to the general public. The point is to uncover relationships among quality of health care and access to high quality healthcare for persons at varying levels of impaired function and disability.
We are inviting you to be considered for inclusion in a Focus Group.
The full research study will last for 3 years. A variety of activities will occur over the course of the study. You may participate in many of these activities. Some will be limited to just a few people at a time. Other activities will be open to the general public.
* Who is qualified to be a research subject:
There will be 3 types of Focus Groups: people with a disability or their proxies; people without disabilities; and clinicians.
For all 3 groups, the following criteria apply:
You must be a US citizen. (Non-citizens can participate in other ways.)
You must be a person 21 years of age or older.
You must have at least 3 months of experience in Second Life and be able to communicate in text (with ADA accommodations).
To be part of the group of persons without disabilities, you must also:
Be a person who does not have a disability at this time, AND
Be a person who is not caring for a person with a disability at this time..
Alternatively, to be part of the group of clinicians, you must also:
Be a practicing health professional, AND
Have had clinical experience in the provision of care to people with and without disabilities
And, if you would like to assist as a person with a disability, you will need to:
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 his or her “proxy.” In this role, you will be sharing his or her likely opinions or experiences, because he or she is not able to do so for him or herself.
We are hoping you might assist in one of those three groups.
*What we are asking you to do:
If you are willing to participate as a research subject in any of the three groups (people with disabilities, people without disabilities, or clinicians), you should:
> send an IM to Sister Abeyante (or email her at sister@virtualability.org) indicating which group you are a member of,
You will then receive a Consent Form notecard with plenty more information, via a notecard attachment.
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1. You will want to read through the Consent Form notecard. You may ask questions at any time about the research, the research process, and your potential involvement as a research subject. Contact information will be on the notecard.
2. Once you understand the project and your potential participation, please follow the directions on the notecard (typing your name and renaming the notecard) and return a copy to Sister Abeyante.
3. Within the next week, 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.
4. Within a few months of taking the online demographic survey, people will be randomly selected to participate in a private Focus Group. The Focus Group will discuss a variety of questions of interest to the researchers, including interpretation of statistical results. The Focus Group meetings will be held in Second Life. Separate Focus Groups will be held for people with disabilities (or their proxies), people without disabilities, and clinicians.
5. The research project continues for two additional years. Other Focus Groups will be selected in future years, and if you are chosen to participate, you will be asked to re-sign the same Consent Form. Note that you can withdraw from the research project at any time.
6. Everyone who signs the Consent Form is also eligible to participate in the public portion of the project. Please see the list below of ways to participate.
If you are interested in the topic of healthcare quality, but do not qualify or do not want to be a research subject, you can still participate in the public portion of the project:
1. Watch the progress of the project at www.HealthcareEquitability.org
2. Participate in the discussion of pertinent topics at http://HealthcareEquitability.org/forum/
3. Attend research reports by project staff, announced in the Second Life Events Calendar
( https://secondlife.com/my/community/events/index.php? ) that are held in the Research Pavilion of Healthinfo Island in Second Life ( http://maps.secondlife.com/secondlife/Healthinfo%20Island/130/196/30 )
If you have further questions, please contact:
Sister Abeyante in Second Life, or email sister@virtualability.org
We are thrilled you’re interested, and most appreciative of your support on this important project.
Sincerely,
Sister Abeyante
Virtual Ability
Daniel Voyager 