As part of the "patient voice" effort, we have been soliciting patient/family representatives to sign up, giving us contact information and letting us know a bit about themselves and how they might be interesting in participating. So far, we have about 30 people who have signed up and about 10 of those have already begun participating in some way.
One current opportunity for participation in the project is a weekly focus group aimed at obtaining feedback from patients and family members. Interested patients, family members and all others interested are invited to come to the Birchwood Computer Room (600 Birchwood Ave. 2nd floor) on Tuesdays anytime between 3:30 and 6:00. These will continue to be held at least through November 2002. The Patient Voice section of the P2 Communication Web contains more information and the calendar shows other opportunities for patient and family participation.
I plan to post the happenings and learnings from each of these focus groups on Wednesdays. So far, there have been 3 focus groups and lots of sharing has occurred.
The first group consisted of 5 patients, all with diabetes; the second group consisted of 2 patients (1 is both a patient and caregiver); and the third group consisted of 6 patients and 2 spouses. We gathered valuable feedback on what they currently found good and not-so-good with finding health information on the internet, and thoughts specific to our patient diabetes website. Here is a summary of what I heard these patients say:
* Some kind of listserv, discussion group or chat room could be developed or linked to - patients want to be connected to other patients. Would it be possible to develop a "local listserv"? Legal questions have held this back. Perhaps have peer group chat rooms with a specialist for education.
* This site could be localized... information on the site could be specific to the Bellingham area. It could provide information on our health care system here, facts about clinics, how to navigate the system, etc...
* This site could link to general disease registry information to provide patients with population data to compare themselves against (this will probably happen within the shared care plan).
* The search strategy could be evaluated for effectiveness and possibly redesigned based on functionality for the users. Patients found the search tool ineffective for finding relevant information (likely due to the fact that a large amount of our content is actually located on external links).
* The navigation strategy of the site could be evaluated for usability and updated as seen appropriate. Patients had a difficult time locating information that they wanted to find given the existing strategy.
* Other features such as Help and Ask-an-Expert could be evaluated for functionality by users and updated. Patients expressed that they would have more comfort in using the Ask-An-Expert if they knew that the doctor responding was local. The thought of utilizing interns for this was mentioned, giving them a chance to hear more of patients' "real concerns" and give them a chance to interact when the question is still something new. Their preference would be secure messaging with their doctor, however.
* Information on diet was a very popular request.
* Complementary and Alternative medicine should be integrated with the presentation of more standard medical care, rather than a separate section.
* Contact information for various aspects of care could be integrated within the health information delivery. One patient likened web sites to a voice phone system ("Press 1 for diabetes", etc...) and very much wanted a "Press 0 to speak with a person"-type option. This may take the form of simply providing a name/email of someone specific within a topic.
* Information on "etiquette for interacting with a person who has diabetes" could be provided in printable form so that patients can distribute this to family, co-workers, etc. Or possibly some kind of "Please Understand Me" guide for people with diabetes.
* Patients felt that it was extremely important that a lot of information and support be provided soon after diagnosis. Perhaps other patients' stories, expectations, helpful hints, etc.
* We could create a "What do I have control over" section.
* Activated patients are wanting to use the web to educate themselves and their physicians on complicated issues pertaining to them (e.g. dealing with both diabetes and post-polio).
* Patients very much expressed displeasure in having the disease treated rather than the person. The perception is that a website that is strictly educating on diabetes is common and not very effective - how do I balance my list of issues?
* Family is wanting to know what to expect might happen that will affect ADLs, etc. with their loved one and how they can take care of it. The desire is to be able to plan ahead and be able to provide good care.
* Patients seem to like the FAQs... perhaps these could be organized and incorporated into the delivery of educational information.
* A request was made for contacts with other patients who are willing to act as mentors. Perhaps the diabetes support group could somehow grow into this role.
I'm certain there's more.... I attempted to summarize.
As part of the latest focus group, we introduced the concept of the shared care plan and presented our vision of the eventual product. The feedback was surprisingly insightful, with the group identifying immediately some of the issues we're finding to be our biggest challenges (namely Who will update it? and expressing doubt that their doctors would have time to integrate this new tool into their care without a monetary incentive). They seemed very excited, in general, about the concept and were surprisingly curious about the logistics surrounding its implementation (even questions on security were raised). The primary "take home" suggestions that we captured were that patients would like the SCP to:
1. Hyperlink meds to more info about them
2. Be able to look at an archive
3. Be able to check drug interactions
4. Be able to look at lab results
5. Be able to translate (yes, like into Spanish) at the push of a button (ouch!)
6. Again, there's more, but more difficult to enumerate out of context.
We happily realized that we have plans already to integrate most of the suggestions that were brought up - it was very nice to hear the desire for such functionality come straight from the patients, however.
Each of these focus groups has proven inspirational. It's wonderful connecting with the voice of the patients and family members - those who we hope will benefit most from our efforts. I welcome all to come to one of these sessions if only to eavesdrop and become re-inspired by the thoughts and insights that are shared.
