In this first post, I’d like to address the “e Patient world” and what you may expect to see develop in this area in the future. E Patients are those patients who are discovering ways to use the incredibly powerful tools and information available on the internet to empower themselves. You can think of the “e” as standing for both “electronic” and “empowerment”.
The best way to illustrate the concept of e patients is to describe my late friend, Dr. Tom Ferguson, who coined the term “e Patient” and spent most of his incredible medical career advancing the concept of patient empowerment through the use of technology. As a matter of fact, he originated this blog and I, along with several of his other friends will be responsible for keeping it going. Tom died last year after a 15 year battle with Multiple Myeloma. He not only conceptualized and wrote about e patients, but was the ultimate model himself. He lived in Austin, TX, but received his myeloma treatment at the University of Arkansas for Medical Sciences in Little Rock. He communicated with his physician here, Dr. Elias Anaissie, by e mail and by phone, and came to town only when he needed certain tests or treatments that could not be done in Austin. He was usually aware of new developments in the field before his caregivers knew about it, gently calling the advance to their attention and asking if this idea might help his condition. He was a great collaborator, constantly asking questions of physicians, caregivers and fellow patients. He strongly believed in the idea that the patient was really the only one who could be in control of, and manage their own health care, and that this should be done by a combination of gathering and monitoring their own medical data, doing research about their condition on the internet, constantly asking questions, and providing regular feedback to the professionals who care for them.
This idea has caught on and there are a number of groups that are embracing and advancing it. One of them is a group called the “E Patient Scholars Working Group” that Tom started. Several years ago, he began writing a “white paper” on this subject. The group continued the work following Tom’s death and has recently submitted the paper to the Robert Woods Johnson Foundation. My relationship with Tom during his time in Little Rock provided me the opportunity to join this group and I have learned a lot from these colleagues about advancing the cause of e patients.
You can become “e patient” by using the tools on the internet to directly interact with professionals about your health care as well as to arm you for self care and for making the most out of your visits with the doctor.