Annie's Weblog

Aloha from Annie

Wed, 03 Sep 2003 00:24:24 GMT

Alas, we won't be hearing from Annie here again soon, as she has left the Pursuing Perfection Project to pursue another adventure, this time on the high seas. Annie was scheduled to depart the Port of Bellingham today with her new beau, headed for points south and salty.

The Project staff sent themoff with a good bye dinner and best wishes for safe passage....Bon Voyage Annie & Brent!

PatientPowered Development Category

Thu, 15 May 2003 16:11:30 GMT

This category was designed to keep you informed on what's happening with the PatientPowered website. This is also an experiment in utilizing categories for information exchange.

Another aspect of this trial is the development of a discussion group about PatientPowered. We welcome your participation.

Patient Voice: A report on what we've done so far...

Fri, 31 Jan 2003 23:42:41 GMT

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:

a proposed process for recruiting patients,

a possible process flow diagram for obtaining information on and from potential patient/family representatives,

a script for follow-up/screening calls for people expressing interest in becoming patient/family representatives,

an outline for the more in-depth training and preparation of patient/family representatives who are interested in becoming committee members,

an outline for the training of Team Leads and interested Committee Members of committees that are interested in integrating patient/family representatives into their meetings and/or team.

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.

Web Site Development Team - SUCCESS!

Thu, 14 Nov 2002 00:12:04 GMT

Yesterday marked the first official meeting of the patient wing of the new Pursuing Perfection Web Site Development Team. The team consists of 6 patients working with Dawn and I on developing a website that fills their needs. We will be involving clinicians and other P2 staff members on the team as the site develops, but will be creating the first prototype based strictly on these same, committed patients working with us on a weekly basis. I've collected a list of an additional 10 patients who are willing and anxious to review the site after it's been created, giving their perspective, feedback and insight to make the final product even more accomodating for a variety of patients and family members.

It's difficult to summarize the specific feedback that we received.... a lot of ideas were presented for both the type and presentation of the educational content and the functionality of the shared care plan. Dawn and I have a lot of work to do over the next week to have something to show them next week that is updated in response to all of the wonderful feedback. In general, I think the comment "they don't want to know about diabetes... they want to know about their diabetes" summarizes it well. We need to find new and innovative ways of asking people questions and providing information responsive to where people are at.

Other general types of information the patients seemed very interested in getting from the website were finding information, finding local resources, finding support, and who to call when. They also showed interest in connecting with other patients through discussion groups or listservs and connecting with professionals through secure messaging, ask-an-expert, and FAQs. Up an coming research was another desired topic.

Our next meeting will be Thursday, 11/21 where we intend to go over our upgrades based on the input and feedback we received, and going further and deeper with development plans.

Patient Perspectives on Patient Education

Thu, 24 Oct 2002 01:09:37 GMT

Last night the focus group discussion centered around patient education. I was absolutely amazed at the awareness and sensitivity the attending patients had surrounding the pressures of the system on their providers. One of the first thoughts to surface was that doctors are so short on time and are reimbursed too little for their efforts, that adding educational time (although very much desired) seemed difficult or impossible under the current system. The thought was voiced that perhaps doctors should be more transparent about the pressures they are under.

So, in the perfect health care delivery system, what does patient education look like? Well, these patients were of the opinion that "If you're really interested, you've gotta find the information yourself." Concern was discussed for those patients who aren't activated enough to search out the information and rely on the limited interactions with their providers for their education. Perhaps creating accessibility to a conciencious, concerned and informed nurse when you have a question would help(hmmm... does that sound like our Clinical Care Speicalists?). A large benefit was seen in hearing the same information from all of your providers -- knowing that they are talking with each other and agreeing on the best method of care. Communication is key: communication with your provider, with a nurse, with other patients. Being able to ask the questions on your mind and receiving answers that make sense in a caring, compassionate and informed manner. Connecting with others in a similar situation who can share their experiences. Having access to information at the time that you have a question, sometimes preventing unnecessary visits to the ER.

Another thought involved access to information. It appears to patients that many providers are hesitant to share test results and other health indicators openly with their patients. One patient said "Giving people information requires them to become more involved in their care". I thought this very insightful... imagine hearing "your blood sugar levels are fine" from your doctor versus "your HbA1c is 6.2 this month, which is up slightly from the 6.0 last month" and possibly a bit of education on the value. Which approach would be more engaging?

I found it intriguing that the discussion centered primarily around access to people in order to exchange information. To me, the underlying conclusion from this is that these patients saw communication as a primary modality of education. Use of the Internet, pamphlets, videos, etc... was typically a result of recommendation from a person. The Internet and flyers at the hospital and Doctor's offices were seen as key ways of connecting people to opportunities where they could learn from others.

I think, perhaps, we should focus a bit more effort on connecting people to people and facilitate opportunities for communication. Could this be a use for Radio?

Another opportunity to sit in on a focus group exists next Tuesday -- 3:30-6:00 at Birchwood (small computer room). I'll be gathering feedback on some innovative ideas for a website.

Inspiring connections with patients

Wed, 16 Oct 2002 23:45:57 GMT

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.