Activity 1: Group Interviews
The goal of this activity was to learn from people with disabilities about their health-related goals and how they could use their own healthcare information to achieve those goals. The primary deliverable of this activity was a set of high-level user requirements that serve as the foundation for all subsequent activities.
Participants were recruited from two separate channels.
- Participants who are blind or visually impaired (BVI) were recruited by email, using connections to disability service organizations and membership organizations in the city where the interviews took place and by asking those first contacted to suggest additional contacts.
- Participants who are physically disabled were recruited from the population of in-house residents and community-based consumers associated with a long term care facility specializing in the care of people with disabilities and who were members of a committee dedicated to addressing important issues to the entire community of residents and consumers.
The goals of the overall study and of the group interview activity were explained. Participants were given the option to consent verbally or in writing. The format of the interview revolved around three open-ended questions:
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?
These questions were delivered to the participants via email prior to the session. At the start of each interview session, participant consent was obtained. Each of the three interview questions was read aloud to the group and individual members were asked to respond in turn. After every participant who wished to had responded, the entire group was given an opportunity to discuss the topic in more detail. The same process was repeated for all three questions.
Multiple study team members facilitated the interview sessions where one took the lead in guiding the discussions and others contributed by adding prompts for discussion. All facilitators took notes and the results were compared in a post-interview debriefing. These notes and the compiled results were reviewed to identify themes and topics.
A total of sixteen people participated in the two interview sessions. Group 1 consisted of three people with varying levels of visual impairment, all of whom lived independently in the community. Group 2 consisted of 13 people of varying abilities associated with a long-term care facility specializing in the care of people with physical disabilities, both in-house residents and community-based consumers. These participants were members of a committee sponsored by the long-term care facility with the objective of supporting important issues to the entire community of residents and consumers. Of these 13 participants, 11 were disabled and lived independently in the community, one was a resident of the long-term care facility, one was the parent of a resident of the long-term care facility and one was an administrator of a care management program.
For question one, "What is a personal goal of yours that is important and that is related to your health?" subject responses presented a number of themes centered on the ultimate goal of achieving and/or maintaining independence. Subject responses were compiled into a set of themes (Table 1).
|Independence||Achieving higher level of independence
Maintaining level of independence
Fear of abandonment
Relationships and social interaction
Home ownership or apartment
Expanding employment opportunities
Balancing employment with disability benefits
|Education / Training||As a means of achieving/maintaining employment|
|Retirement||Planning for retirement
The relationship of employment and independence to retirement
For Question 2, "How do you or would you need to manage your health to reach those goals?" subject responses presented a number of themes where health and healthcare were critical factors in supporting the ultimate goal of achieving and/or maintaining independence (Table 2).
|Maintain Health||Maintain current level of health
Manage pain (pain free)
Manage chronic diseases such as diabetes
Manage weight and diet
Understand and prepare for degenerative disease conditions
Mental health (depression, staying positive)
|Healthcare Access||Convenient access to healthcare providers
Quality of healthcare providers
For question 3, "What kind of information would help you track your progress to meet your goal?" subject responses presented more specific descriptions of factors in managing health (Table 3).
|Access to Patient Records||Collocated patient information (all in one place, one system)
Access to complete chart
Information to support understanding information in chart
Ability to record/comment/update patient chart (such as patient history and family history, current medications...)
|Types of Information||Lab results
History (family, social, diagnosis, surgical, immunization...)
Track health information over time
|Communication||Capability to communicate and share information with care providers
Communication across multiple care providers (specialists, primary care...)
Alerts and reminders
Communication for scheduling multiple appointments in the same place on the same day
|Resources||Information about finding providers
Treatment/Service/Care Plan access
Information on specific disease/diagnosis
Patient education materials
Logs/diaries to track care/health
Managing insurance processes
|Equipment||Managing equipment acquisition
Managing equipment repairs
See the functional requirements section of the report for details.
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