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JAMA has an interesting Patient Page on quality of care. The definitions of e-Patients and Participatory Medicine mention or point to quality of care. Are we talking about the same thing? NOT AT ALL!

If the patient page of JAMA represents the official position of the organization, which is almost certainly the case, we see how much work we still need have in front of us to change the mindset of many, if not the majority of,  doctors.

The JAMA page reads:

Improving communication in health care means that patients need to participate actively: ask questions, speak up if you do not understand what is explained to you, and bring a list of your medications each time you visit a doctor. Bring a family member or trusted friend to help you at health care visits, especially if you have a hard time hearing, understanding, or reading or if concerns about the visit limit your ability to communicate.


In the AMA terminology the active participation of the patients means:

  •  listen
  • speak up about the doc instructions if they are too complicated
  • let the doc know of the medications you take

In the e-Patients world the active participation of the patients means:

  • read and become as informed as you can be to have an informed conversation with your doctors,
  • participate in conversations and share with other patients/caregivers/anyone interested in the same disease,
  • speak up with your doctor about all possible treatments, not just the one he/she is advising

Is it only me or does the JAMA page still smack of the old paradigm’s medical paternalism? Let’s look at another section of the page:



    * Board certification indicates that a doctor has achieved a level of knowledge that meets a high standard for that specialty.

Based on the information on the JAMA page any oncologist is qualified to properly diagnose and treat a case of leiomyosarcoma (LMS). The first advice a new subscriber will receive from the ACOR leiomyosarcoma social network is to find an oncologist who is specialized in sarcoma and further specialized in leiomyosarcoma. If the diagnosis is for uterine leiomyosarcoma (ULMS), the advice will even be to find oncologist who sees regularly patients with this specific type of leiomyosarcoma because the treatments are so different from the other types of leiomyosarcoma. But there is clearly no specific board certification for either Sarcoma oncologists, Leiomyosarcoma oncologists or ULMS specialists. There is not even the possibility to find such specialists on ANY of the “find a doctor” sites that have popped up in the last 2 years. If you have LMS and haven’t found one of the LMS social networks you are on your own!

RIGHT HERE you see the real power of the medical social networks and the power of participatory medicine. It cuts through the chase, doesn’t have any hidden agenda, is not owned by anyone and is completely transparent. If you or a loved one has already dealt with a rare condition you know what I’m saying. If not, it is only a question of time before you find yourself in the hands of a doctor who may feel, because he has according to all the existing regulations (thanks to a tremendous amount of AMA lobbying over the years) the right education and the proper credentials to treat any patient!

The advice given on all the social networks for rare condition is universal: find a real specialist for the disease. It can easily be a choice between life and death. Specialists in any rare cancers treat many such cases every year, unlike a general oncologist who may not have seen a patient with the disease for years. It is ALWAYS a choice about the quality of care you will receive because doctors specialized in one of more rare conditions know that optimal treatment REQUIRE team work.

The JAMA page has this jewel at the end:

    * You should understand who is taking care of you: doctors, physician assistants, nurse practitioners, other nurses and nursing assistants, and other health care professionals all work together to take care of patients, although they have different education, training, and scope of practice (what they are qualified and licensed to do). 

Where is the patient, as a member of the team? Is this JAMA latest version of patient-centered medicine? Where the patient is still exclusively on the receiving end of care, instead of being asked or at least invited to be an active member of the team.

Many blog posts have been produced lately about the lack of transparency in the healthcare system. One of the ways to improve transparency is to get the patient, the real recipient of care, involved at every level. Not tell him/her that they should listen to their doctor!