Recently, I was involved in a discussion on an email list serve and decided to takes some of my comments on patient autonomy and blog about them. This arose following a debate about whether the term “patient” engendered a sense of passivity and, therefore, whether the term should be dropped in favor of something else, like “client” or something similar.
Having participated in the preparation and dissemination of the white paper on e-patients, I don’t see the need for “factions” or disagreements in the service of advancing Participatory Medicine. As Alan Greene aptly stated: “This is a big tent, with room for all.”
I want all of my patients to be as autonomous as possible. In my view, their autonomy is independent of the doctor-patient relationship that I have with them. They make the choice to enter into, or to activate or deactivate, the relationship with me. They may ignore my input, seek a second opinion, or fire me and seek the care of another physician at any time. They truly are in control in that sense. The only thing I have control over and am responsible for is trying to provide the best advice or consultation I can. Read more »
*This blog post was originally published at eDocAmerica*
A year ago Gangadhar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant issue through empowered, engaged research. As today’s guest post shows, he’s now actively engaged in thinking about healthcare at the level of national policy, as well – and he calls for all patients to speak up about this new issue. – Dave
I recently came across a Pauline Chen piece in the New York Times, “Listening to Patients Living With Illness.” It refers to a paper by Dr. Wu et al, “Adding The Patient Perspective To Comparative Effectiveness Research.” According to the paper and the NY Times article, Dr. Wu and his co-authors propose:
- Making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection.
- In some cases requiring the information for reimbursement.
Patient-Centered Outcomes is outcomes from medical care that are important to patients. The medical community/research focuses on the standard metrics related to survival and physiological outcomes (how well is the part of the body being treated?). In the patient-centered outcomes research, they will also focus on outcomes important to patients such as quality of life. In other words, the care experience will be viewed through the eyes of the patients and their support groups to ensure that their concerns are also addressed. Read more »
*This blog post was originally published at e-Patients.net*