Appendix A: Group Interview Materials and Resources
This section provides all the following materials used in this activity:
Pre-Interview Email Communication to Group One: People with Visual Impairments Recruited from the Community
Here are some details for the focus group on accessible health records. This email is organized in three sections:
- Directions, including information about where we'll meet you
- A preview of the discussion questions for you to begin thinking about
- Privacy and participation information
1. Directions, including information about where we'll meet you
[not included in this report: Detailed directions on meeting location, contact, etc.]
2. A preview of the discussion questions for you to begin thinking about
Please think about these three questions. At the focus group, we will go around and give each participant a chance to answer. Please realize participating in this activity is completely voluntary. At the end of this note is a description of how we will protect your identity and information, and how you are free to participate or not.
Question 1. What is a personal goal of yours that is important and that is related to your health?
For example, you may have a goal to move to a larger apartment or to buy a home, or be able to attend classes to further your education. Or you may want to make sure that you stay healthy and don't have to be admitted into a local hospital, or have easier access to transportation. Try to think of similar personal goals for yourself that require you to stay healthy. (If you are not comfortable sharing your goal, you can skip this part of the discussion).
Question 2. How do you or would you need to manage your health to reach those goals?
Think about how your health and healthcare can help or prevent you from achieving your goal. For example, being able to communicate easily with or see your doctor when you need to, better understanding your medications and potential side effects, getting the equipment you need, etc..
Question 3. What kind of information would help you track your progress to meet your goal?
For example, imagine if you could access a report, note or even a graph describing your care over the past six months that would help you understand both what helps you meet your goal as well as what is preventing you from achieving your goal. What would be the most valuable information that you would need? Would your Care Plan have this information, or do you need more?
3. Privacy and participation information
We will cover this at the beginning of the meeting where you will have the chance to agree to participate or not and have any questions/concerns addressed.
What is this project about and what will you ask me to do?
This project is a three-year grant focused on how to make technology more accessible to people with disabilities so they can manage their own health. We are asking you to participate in this study, which will include one or more of the following activities over a three year period: interviews, focus groups, surveys, technology design reviews and usability tests. Each activity will take no more than 90 minutes and no participant will be asked to take part in all of these activities.
Who is doing this project?
This research project is being led by the WGBH Carl and Ruth Shapiro Family National Center for Accessible Media (NCAM) in collaboration with Inglis Foundation and Children's Hospital of Philadelphia, Center for Biomedical Informatics. The U.S. Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR) is funding the research project.
Do I have to participate in this project?
No. It is your choice whether to participate or not. In addition, you may participate in only those activities you wish to. Also, you have the right to stop participating at any time during any activity, and you do not have to answer any questions that you don't want to.
What are the risks and benefits?
There are no anticipated or known risks in participating in this project. In participating in this project, you have the opportunity to provide insights about how healthcare technology can be designed to meet the needs of people with disabilities.
How will you protect my privacy?
Your identity will be kept confidential. Any responses to questions you provide will be “de-identified” meaning they will not be attached to your name in any way. Only individuals working on the research grant will have access to the list of participants.
More Information
If you have questions about this project, you can contact:
Larry Goldberg, Principal Investigator
The Carl and Ruth Shapiro Family National Center for Accessible Media at WGBH (NCAM)
One Guest Street, Boston, MA 02135
[phone number and email address redacted]
Pre-Interview Email Communication to Group 2: Residents/Consumers associated with Long Term Care Facility and Committee Members
Dear _______ Members,
In our next meeting, _________, we will be hosting ____________ and _____________, our colleagues you recently met in November from the Accessible Personal Health Records project who introduced you to the project. In this next meeting they would like to spend one hour in an open circle discussion asking you a few key questions about your experiences, opinions and ideas toward developing accessible technology to help you manage your own healthcare.
Please realize participating in this activity is completely voluntary. Pasted at the end of this note is a description of how ____ and ____ will protect your identity and information, and how you are free to participate or not.
In preparing for this meeting, we would like you to think about three general topics we will discuss in the circle format. We will ask the group the following questions and give everyone a chance to respond:
Question 1. What is a personal goal of yours that is important and that is related to your health?
For example, you may have a goal to move to a larger apartment or to buy a home, or be able to attend classes to further your education. Or you may want to make sure that you stay healthy and don't have to be admitted into a local hospital, or have easier access to transportation. Try to think of similar personal goals for yourself that require you to “stay healthy.” (If you are not comfortable sharing your goal, you can skip this part of the discussion).
Question 2. How do you or would you need to manage your health to reach those goals?
Think about how your health and healthcare can help or prevent you from achieving your goal. For example, being able to communicate easily with or see your doctor when you need to, better understanding your medications and potential side effects, getting the equipment you need, etc..
Question 3. What kind of information would help you track your progress to meet your goal?
For example, imagine if you could access a report, note or even a graph describing your care over the past six months that would help you understand both what helps you meet your goal as well as what is preventing you from achieving your goal. What would be the most valuable information that you would need? Would your Care Plan have this information, or do you need more?
We hope you find this a worthwhile experience. If you have any questions, please respond to this email.
Also attached is the privacy and participation information. We will cover this at the beginning of the meeting where you will have the chance to agree to participate or not and have any questions/concerns addressed.
Subject Consent Form
Accessible Personal Health Records Subject Participation Request Form
What is this project about and what will you ask me to do?
This project is a three-year grant focused on how to make technology more accessible to people with disabilities so they can manage their own health. We are asking you to participate in this study, which will include one or more of the following activities over a three year period: interviews, focus groups, surveys, technology design reviews and usability tests. Each activity will take no more than 90 minutes and no participant will be asked to take part in all of these activities.
Who is doing this project?
This research project is being lead by the WGBH Carl and Ruth Shapiro Family National Center for Accessible Media (NCAM) in collaboration with Inglis Foundation and Children's Hospital of Philadelphia, Center for Biomedical Informatics. The U.S. Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR) is funding the research project.
Do I have to participate in this project?
No. It is your choice whether to participate or not. In addition, you may participate in only those activities you wish to. Also, you have the right to stop participating at any time during any activity, and you do not have to answer any questions that you don't want to.
What are the risks and benefits?
There are no anticipated or known risks in participating in this project. In participating in this project, you have the opportunity to provide insights about how healthcare technology can be designed to meet the needs of people with disabilities.
How will you protect my privacy?
Your identity will be kept confidential. Any responses to questions you provide will be "de-identified" meaning they will not be attached to your name in any way. Only individuals working on the research grant will have access to the list of participants.
More Information
If you have questions about this project, you can contact:
Larry Goldberg,
The Carl and Ruth Shapiro Family National Center for Accessible Media at WGBH (NCAM)
One Guest Street, Boston, MA 02135
[phone number and email address redacted]
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