A few days ago a group of patients and their families talked to Ed Wagner about their experiences in Pursuing Perfection in Whatcom county. Each of these patients had a clinical care specialists and a shared care plan. What I heard changed my thinking.
They described the role of the shared care plan differently than I had expected. As I listened I came to see that for them it was a cultural artifact, an object around which improved conversations can occur. In the doctor's office, a paper copy is used to help the physician or nurse understand where the patient is in their goals and understanding. Likewise this piece of paper helps the patient learn from physician or nurse. They can write down and discuss medical concepts, diagnoses, medications, goals and plans. I heard that without this piece of paper the 15 minutes of an office visit is often confusing and less valuable. I heard over and over that this piece of paper help create a relationship between the doctor and patient that is more like a partnership than a trip to the principles office. One patient's daughter made the cute comment, "Dad is getting kind of uppity. He uses big medical words now." The point I took away is that now he understands the meaning of important medical concepts and that he, with his family and care team, can do a better job of managing his situation with diabetes.
Even more surprising was the story of a family. Before the shared care plan, "Dad, did not want to bother us with his diabetes." Little communication about his needs for special diet, exercise, and medications occurred, due to his desire not to be a burden. Since the daughters and wife have access to his shared care plan, they now print it out and talk together about what they can do to help. They have all changed their diets as they learned to change the cooking for their father. They understand more about what they can do to reduce the chances that they and their children will develop type II diabetes. This simple piece of paper has become the focus of new family conversations that help everyone. It has obviously added meaningfully to the lives of this family.
Something important is happening here. We are discovering with patients how to move beyond business medical records (which help physicians and nurses get the information they need and help insure that they get paid for what they did) toward a shared document about which learning and planning for improved self-care and partnerships can develop.
You can download a Microsoft Word version of the Shared Care Plan from https://www.patientpowered.org/PatientSite/Login.asp and you can look at the on-line electronic version which prints out for those who have assess to it. In Whatcom county, Washington, we are opening up use of the electronic version to patients and their families and caregivers.
For those of you who what to know more about the best thinking for how communities can support their citizens with chronic medical conditions, I recommend the Improving Chronic Illness Care site http://www.improvingchroniccare.org/index.html
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