[Nfbmd] Focus Groups on Access to Healthcare--Soliciting Input from the Blind/Low-Vision Community

Frye, Daniel Daniel.Frye at ed.gov
Wed Feb 1 20:07:29 UTC 2012


Colleagues:

Officials at the University of Maryland, Family Medicine Practice Group, have reached out to me and asked that I circulate word about, and encourage participation in, two focus groups that they are administering related to healthcare access and study. In an effort to reflect a diverse array of perspectives, a concerted effort is being made to reach out to the blind/low-vision community. I am a patient at this clinic, and my physician occasionally will ask me to help him and the practice identify resources in the community of interest to blind people, promote something of interest to blind people, or answer questions about blindness in general. Toward this end, I've connected with these people, and I'm forwarding information as requested. Two focus groups are being planned, with a capacity of eight to ten people each, scheduled during different times of the day to accommodate those who are working and those who are not working and have the ability to participate during conventional working hours. If you are interested in this opportunity, please see the information below and attached. I know nothing more about this project than is provided below, so direct any substantive inquiries or offers to participate to the study organizers. But I can endorse the professionalism, credibility, and good faith of the team at the University of Maryland, and this should be a comfort to anybody with reservations. Here is the information:


Patient Centered Outcomes Research (PCOR) Low Vision FOCUS Group
www.pcori.org<http://www.pcori.org>

When: Thursday, February 9, 2012, from 3:00-4:00 p.m. and Monday, February 13, 2012, from 5:30-6:30 p.m
Where: University of Maryland, Family Medicine Clinic, 29 S. Paca Street, Baltimore, Maryland 21201

What are we asking you to do: Participate in a focus group of about 10 persons with blindness or low vision.  The focus group will be led by a professional facilitator.  The discussion will be guided by a series of questions.  The discussion will last about 60 minutes.   Supper or snacks will be served and participants will receive a $25 gift card for their time.
Why participate: Traditionally, researchers ask patients to participate in their projects as human subjects but neither engage patients in designing the study nor ask patients to help identify the most important research questions. Minority and other groups disadvantaged by mobility, hearing, and vision problems in particular, have been left out of the research process.  Our research aims to change this one-way relationship and determine how best to engage patients who have been traditionally hard to reach for participation in the research process.
Our goal is to develop methods that can be used to create a relationship between researchers and patients based upon trust and respect in order to generate relevant, patient-centered study goals and encourage mutually-beneficial patient engagement in research.
 As a person with blindness or low vision, you have important perspectives and insights that will greatly contribute to this project.
We will be asking your thoughts about ways to increase the engagement of patients, such as yourself, in the research process so that diverse perspectives on what is important are included.   As part of this project, our research team will also be conducting about 15 addditional focus groups with other relevant stakeholder groups including: persons with disabilities, their caregivers, doctors, nurses, and community groups.
Who are we: We are a multi-disciplinary research team from University of Maryland - Schools of Medicine, Nursing, Pharmacy and Westat, a highly regarded, independent research organization.

This is an opportunity for you to bring your voice to patient-centered research!
Questions?
Call Beth Barnet, M.D. - University of Maryland Department of Family & Community Medicine
410-328-2627 (work)             410-916-6645 (cell)            bbarnet at som.umaryland.edu<mailto:bbarnet at som.umaryland.edu>



Daniel B. Frye, J.D.
Management and Program Specialist
Randolph-Sheppard and Helen Keller
National Center Programs
U.S. Department of Education
Office of Special Education
and Rehabilitative Services
Rehabilitation Services Administration
550 12th Street, SW, Room 5023
Washington, DC  20202-2800
(202) 245-7308 office
(202) 245-7591 fax
(410) 241-7006 mobile
daniel.frye at ed.gov<mailto:daniel.frye at ed.gov>

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