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.

9:11:30 AM     comment []   Google It!  

Patient Voice. 

What we’ve done so far as a small test of change.

4:42:41 PM     comment []   Google It!  

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.

5:12:04 PM     comment []   Google It!  

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.

6:09:37 PM     comment []   Google It!  

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.

4:45:57 PM     comment []   Google It!  

I have been supported by several people to try and put down on Radio some of my thoughts about how things are going with the Pursuing Perfection Project from a team development standpoint. I seem to be one of the more sensitive and outspoken team members about general structure, culture and team development aspects of our project, and have been bringing out thoughts and concerns surrounding those issues at group meetings, but this will be my first attempt to put it to “paper”… so bare with me.

What is happening with our team? What am I (and apparently others as well) experiencing that feels as if it’s holding us back from achieving our full potential as individuals contributing to the team as well as a team as a whole? Why are we finding it difficult meshing seamlessly with each other as team mates? Why does it seem so difficult to move forward?

As a precursor, I’d like to emphasize the fact that I truly believe each and every person I’ve encountered who’s involved with the pursuing perfection project knows, understands and believes strongly in the system changes we will be attempting to implement as part of the project. The people involved are also extremely capable, typically at many levels and with many aspects of the project. The people are motivated and hard-working. The people are completely committed to both their contribution and the overall project goals. Every person involved is wanting and attempting to do his or her best as part of the grant effort. Many of us have given up security and a known future for a chance at being merely part of this movement toward a perfect healthcare delivery system. So, let it not for an instant cross your mind as you read my thoughts that I believe that any person, in any way, is to blame for any of the “problems”.

I will attempt to use the “Awareness Star” to express my thoughts on this topic. This is difficult for me since I seem to be perceiving issues on two separate levels… there is the general project perception: what is going on with the team as a whole; and there’s the individual level: what is happening to me, likely as a result of the bigger picture issues.  I don’t think I can successfully separate these, so I apologize for any confusion this may cause. For clarification, when I say “the team”, I am referring to the collective whole of all the individuals who are contributing to the Pursuing Perfection Project, not the “project team” per se, although I think the “project team” interactions exemplify the team as a whole.

I’m feeling…..

I’m feeling disconnected from the project itself. I’m feeling a lack of definition both in my purpose and place in the team and in a general sense. I’m feeling a severe lack of utilization of my gifts that I have to give the team. I’m feeling misused and used as a “worker bee” in a capacity that is not even my specialty, rather than as a contributing member to the project as a whole. I’m feeling duped… like I took this job thinking that I would be used for my mind, my analytical ability, my creativity, my experiences both as a patient and with patients but instead am being used strictly as someone who can put predefined “stuff” up on the web. I’m feeling like I’m alone… like the team is elsewhere… like no one knows how or why to utilize me and my gifts, nor I them.

I’m sensing….

I’m sensing discontent and frustration from nearly all people present at meetings. I’m sensing frustration at not being able to make authoritative decisions. I’m sensing discontent about process and decision-making capacity. I’m sensing general confusion about who’s leading who, how to involve patients, what we mean by patient-centered. I’m sensing a need for very general discussions about these topics. I’m sensing a need for social change that isn’t being talked about. I’m sensing hesitation about bringing forward confusing issues. I’m sensing a need to move quickly and a resulting loss of control.

I’m thinking….

I’m thinking Mary is the only person who has the “big picture” view and that this is not healthy. Mary used the analogy of an orchestra where she is the conductor and we all need to be playing our own instruments, not other people’s, in order to make the music work. My contention is that if we don’t all learn how the entire piece sounds, when the violins play and what their part sounds like, if we don’t understand how our own part fits in, then the music will fail to come together. I’m thinking there is a lack of learning about each other’s parts, not due to lack of desire, but due to lack of opportunity. To use the same analogy… my perception of the way things currently are is that each section of the orchestra is practicing their own part separately, at different times. Mary, as the conductor, is privy to the entire piece and what all of the different sections sound like and has a vision of how they will all come together beautifully at the concert.  My concern is, if we don’t practice together as a whole, how will we be able to perform together seamlessly?

I’m also thinking there’s a lack of role definition and clarity along with a lack of authority granted to those who are supposed to be leading projects. I understand that collaboration is key, but there has to be a process for coming to decisions and I’m thinking that process, if it exists, is not commonly known or bought in to.

I’m thinking that we talk an awful lot about making this new system “patient-centered” and about involving patients in the creation of this new system, but don’t see the process through which this is or even should be happening or even if we’re all on the same page as to what it means to be “patient-centered”.

I’m wanting….

I’m wanting the people involved with the project to be more involved in defining the roles they play within the team. I’m wanting there to be more information sharing to be happening between various groups, teams and projects so that we can all better see and understand how our pieces fit in. I’m wanting general discussions about the project, what the current projects, goals, opportunities, etc. are. I’m wanting ongoing discussions about the project, on a general level, that allows new participants to give some input into the overall plan and goals. I’m wanting a process for continually evaluating where we are, where we want to be going, what our goals are, how successful we are at being patient-centered and at allowing it to be “their treehouse”, if we’re taking a proper path… and I’m wanting all people interested to be able to be involved in these discussions…. Perhaps this is a good use of Radio Userland? I’m wanting a methodology established for obtaining and utilizing patients, family and care givers in the project development process.

For me, personally, I’m wanting to have more say in what I am assigned to do and to not do (in a general way). I’m wanting more access to people and more information so that I can understand my role. I’m wanting to not only understand my role better, but to have some say in what my role is. I’m wanting well established boundaries so that I can both fulfill expectations of me and take control of my turf so that evaluation of me and my performance will be accurate. I’m wanting to be more involved in the development of the shared care plan (not on a technical level as much as a conceptual level) and the involvement of patients. I’m wanting to have discussions on the technological aspects of the project in general – given the “fact” that only 25% of our patient population will be comfortable utilizing technology, I’m wanting discussions surrounding how this fact will be dealt with. I’m wanting to be able to visualize the project as a whole… not just my piece. I’m wanting to be able to discuss reasons surrounding decisions that result in work that is designated to me, or preferably, to be involved in the discussions that end up in decisions that affect my areas of expertise.

Action I will take….

Should I act? Can I act? How will my actions be interpreted? I guess one action is my writing this down; to attempt to begin discussions about what is happening with me and possibly with the team. Another action I will take, and have already begun, is to collect names of patients, family members and care givers who have volunteered to be available to members of the Pursuing Perfection Project in various ways to contribute their voice. I am also establishing a process through which project members can access these folks for various needs. A further action is to meet with Mary in an attempt to establish better role definition and clarity for myself. I would like to initiate an educational movement whose goal would be a social change throughout Whatcom County, changing the beliefs surrounding medical care toward the new model, both to providers and to all potential patients; the primary message being “for chronic illnesses, primary responsibility for treatment lies with the patient and their family.” (this message is my interpretation only and I recognize it as extreme.)

Well, there it is… my brain, heart, soul…. downloaded on the Internet and open for discussion.

9:42:20 AM     comment []   Google It!