Patient Voice.
What we’ve done so far as a small test of change.
September 2002 – present: Recruiting Patient/Family Representatives
- Brainstormed ways of recruiting patients and family members.
- Developed an information hand-out on the desire for and role of the patient/family representative.
- Developed an informative sign-up sheet to collect names of interested people.
- Developed on-line patient/representative sign-up sheet and made available at strategic locations on the Internet.
- Placed patient/family representative sign-up sheets in visible place at Pursuing Perfection clinics.
- Placed an ad in the Bellingham Herald and other news sources.
- Interacted with patients at the diabetes support group, Joslin Community Forums, and other community outreach arenas where we recruited patients and family by having them complete patient/family representative sign-up sheets.
September - October 2002: Weekly Drop-In Focus Groups. Tuesdays 3:30-4:30 & 5:00-6:00
- Contacted about 15 patients who had expressed interest in patient voice and focus groups in particular – about 10 were very interested.
- Topics: Optimal education, optimal website, feedback on website, feedback on shared care plan.
- For the first meeting, I mailed each interested patient a description of the group and directions to the meeting place. After the first meeting, I sent a letter to all those who attended thanking them for their efforts.
- For meetings that were important to get attendance, I called and/or emailed most of the interested people – this typically resulted in attendance of 5-10 people.
- For other meetings, I didn’t take any reminder steps – these meetings typically resulted in low attendance (0-3).
- I reserved rooms for the meetings, typically a computer room, provided minimal food and beverages for the meetings, and provided transportation for one of the participants, when needed.
- Feedback from these focus groups has been previously posted on radio: General thoughts on Websites and Patient Education.
October 2002: Orienting Patient/Family Representatives to the Project and their Role
- Created a Website designed to keep patient/family representatives up-to-date on opportunities that are available to them for participating in the project.
- Maintain list of opportunities to offer interested patients.
- Developed a curriculum for and held a 1-hour Patient/Family Representative Orientation that all of the interested patients/family have been encouraged to attend. We evaluated our efforts - it should have been 1.5 or 2 hours) and hope to offer this orientation again in the near future.
November - December 2002: Web Site Development Team.
- I called about 20 people who had completed the patient/family representative form, most of which I had already met in my focus groups, and offered them the opportunity of joining me on a team of patients that would be designing a new patient website. 7 patients committed themselves to 6 weekly meetings of the team. An additional 10 people agreed to act as feedback; I would email them the link and gather feedback from them virtually once the site was basically complete.
- Each meeting focused on a particular aspect of the site.
- Each week we picked a time for the next meeting that everyone could make, and I made reminder calls and emails the day before to confirm attendance. I also provided minimal munchies and beverages during the meetings and transportation for one member.
- The result of the six successful meetings of this team was the website www.PatientPowered.org
- At this point, I’d like to convene more patient teams to help with further content development and guidance.
It has been both an immense pleasure and a total inspiration working with these patients.
In addition, we have developed some tools that have not yet been integrated into what we’ve done, including:
Please feel free to contact me if you have any questions on any of this information or if I can answer questions or be of assistance in your effort to involve patients in the process.
