As the first blogger on this site, I write first as a person who has been diagnosed with three different types of cancer and a serious heart condition -- and as one who manages the long-term effects of that many diagnoses and that much treatment on a daily basis.
I also write as an advocate. I have worked on health behavior concerns in the private sector at AT&T, the voluntary sector at the American Cancer Society, and the public sector at the National Institutes of Health. For the past 20 years, I have led the Center for Advancing Health, a national nonprofit devoted to increasing both research on the impact of behavior on health and the use of the resulting evidence in the delivery of health care and public health services.
Following my most recent cancer diagnosis in 2003, I was amazed at how much I was expected to know and do to find good care and make sure it was effective. Getting a second opinion, choosing the specialists, getting the records to the right people at the hospital, arranging payment, undergoing tests, then coming home from the hospital two days after major abdominal surgery and managing the symptoms, pain, drugs, diet, rehabilitation and communication with various clinicians for weeks. At each step, this journey could have gone wrong. It wasn't just the doctors and nurses. My own efforts were critical to the success of my care.
I was particularly struck by the contrast between this experience and my two previous cancer diagnoses 20 and 30 years before. Not only were the diagnostic and treatment technologies vastly improved, but the expectations of what I would do to care for myself -- often unstated -- had changed dramatically.
Acting to find good, effective care was difficult for me, even with my expertise in research and health care and my unfortunately extensive experience with illness.
I am not alone. I have talked with hundreds of people who were surprised by what they had to do to ensure that they received good care and who struggled to unravel the complexities and to fit those demands into their lives.
My question for you: How can we make it easier for patients and caregivers to take on the role and responsibilities of a Prepared Patient?