E-patient is a $10 word for a patient who is engaged and participating in treatment decisions. After all, these are our lives and our bodies or our children. To see a great discussion of a successful e-patient in action, please read about ePatient Dave on the e-patient tab on the menu.
An example of why e-patients explore options and engage
I was surprised when I came across this headline: Rheumatoid arthritis patients caught in middle of doctors’ disagreement over hand surgery. So says an interesting group of studies from 2003 which found extreme differences in the ways that doctors viewed treatment for RA hands. For example, the majority of hand surgeons (82%) believe that that joint replacement improves hand function; however, only 34 percent of rheumatologists agree. Differences vary by state as well as by specialty. Some operations are performed 12 times more often in some states than others. Doctors aren’t sure what is best for patients.
“… Americans with rheumatoid arthritis are caught in the middle of a debate among physicians over which treatment – medications or hand surgery – will help their ravaged fingers and wrists most …Rheumatoid arthritis care can vary tremendously depending on where patients live, what type of physician they’re referred to, how much cross-training and interaction those physicians have with others, and what an individual doctor personally thinks of other specialties,’ says Amy Alderman, M.D.”
A simple explanation of why e-patients exist
1) How can a patient know what to do when the doctor might not know?
That hand article made me think, what is a patient to do? How is a patient to know what is best? I remember a time with my daughter when we didn’t know what to do and the doctors didn’t seem to have a clue. She had played tennis for years and she loved it. When she was 13, we went to her pediatrician because of a painful wrist. She was prescribed NSAIDs and rest. At some point, I also bought her a brace for her wrist, but it never got better. She played in pain, trying not to complain.
Over the next year, she saw other doctors in the practice and she was always prescribed NSAIDs and rest. We had a hunch that more needed to be done, but with the HMO, we didn’t know how else to get help. In a system like that, the “primary care provider” is like a gatekeeper who decides what specialty care you need. Eventually, we got assigned a new pediatrician. He had a much different answer: “You need to quit playing tennis and find another sport.” We applied for another primary.
The response of the 3rd doctor was still different. “Young lady, you have a very large ganglion cyst. I’m sending you to the best hand surgeon around.” Shortening the story, the hand surgeon found the cyst to be large and tough. He insisted that it required surgery, but we allowed our then 15 year old daughter to choose a painful attempt of removal by extraction of fluid. That doc was right; he was unable to extract any fluid from the mature cyst. He operated. She got better. She is in college today on a tennis scholarship.
2) We don’t know, but we become engaged to weigh options.
How could several doctors tell us there was nothing wrong with my daughter’s wrist? I don’t know, but I’ve also had a mechanic mistakenly tell me there was nothing wrong with my car. How could I have known what she needed? For a long time, I couldn’t. However, I’m sure that if I’d used the internet back then, I could have researched wrist pain.
How do RA patients know whether they should wear a ring splint to help prevent a swan’s neck deformity or when physical therapy will help? How can a patient determine when partial joint replacement or joint resurfacing or surgical fusion is the best option? This is where the idea of e-patient is involved. It doesn’t matter what you call it, but a patient who needs to find answers will look for them.
When a patient looks for answers himself, he becomes an engaged. E-patients ask neighbors and go to the library, but these days, they most often search online. E-patients visit blogs and forums looking for someone with a similar situation. They search sites like WebMD for articles by doctors. E-patients usually see Dr. Google eventually and may end up reading the same studies that doctors read. What they want is reliable input to answer their questions.
3) As e-patients, we weigh options, hear experts, and choose.
Like the hand study above, I’ve noticed different approaches to many of the problems that RA patients deal with all the time. There are rheumatologists who still practice by the pyramid treatment scheme. There are those who don’t prescribe folic acid with methotrexate. RA docs differ on how soon they change Biologics, whether they prescribe narcotics, and how they diagnose the disease. Patients often have choices about which doctor to believe. I’m glad my daughter didn’t believe the one who said, “Just quit.”
Would you consider yourself an e-patient?
- Folic Acid with Methotrexate: the Debate
- Video: Good Rheumatoid Arthritis Doctors Treat Patients
- Pyramid Approach to Rheumatoid Arthritis Trashed
- How Soon Should You Switch Biologics for Rheumatoid Arthritis?