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.
