Quality of Care & e-Patients

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!


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22 Responses to “Quality of Care & e-Patients”

  1. Susan Willard says:


    Your insights and comments are dead on, sadly! It is unimaginable this articulation is coming from JAMA in 2008. Patient-centered Care – Hah! It tells me a great deal about AMA/JAMA editoral.

    Thank you for sharing this information, which I would not have seen most likely, as a layperson. This will be posted in our office at Patient Vanguard, and shared with my small team, to keep us focused on our mission.

  2. Dear Gilles,

    Thanks for your comments on the recent JAMA Patient Page on the “Quality of Care.” Your points are well-taken but I believe that the AMA, and I’m not a member, is really concerned about all patients.

    Their opening line, “Quality of care is a cooperative effort that involves patients, doctors, nurses and other health care professionals, as well as institutions.” I believe that the necessary elements of our new doctor – patient relationship or “Participatory Medicine” must include the following:
    1.) New standards of care for Preventive and Acute Care Medicine
    2.) Improved health outcomes given the limitations of disease
    3.) Better patient and physician communications regarding clinical illness and mental health -” Let’s talk….”
    4.) Incorporation of e-patient educational activities and a critical review of those aspects for patient care
    5.) Compliance with the accepted medical treatment goals
    6.) Personalized medical care with “trust” as the bridge between patient and physician
    7.) Professional education excellence
    8.) Improved patient safety
    9.) Implementation of error reduction practices
    10.) Access for reliable, educational, and academic health resources for everyone’s wellness and health as well as aspects of patient medical blog experiences that may benefit a patient’s medical care

    Our time is now, to be constructive, not destructive, as we all begin to reshape the practice of health care in America. We are at a new era for medicine and both patients as well as health professionals must realize that this will take a unified effort to make this a success.

    Thanks for listening.

    Harlan R. Weinberg,MD,FCCP
    Diplomate of the American Board of Internal Medicine, Pulmonary Disease and Critical Care Medicine

    Author, “Dr. Weinberg’s Guide to the Best Health Resources on the Web,” Harper Collins, 2008

  3. Gilles, absolutely agreed. It’s as if the JAMA writers either never saw Tom Ferguson’s 1995 slides or they simply disagree.

    Harlan, it’s good to hear from you. I think the point here isn’t whether the AMA is concerned about all patients – the whole point is whether the AMA (as an institution) views patients as active participants in their own health and particularly health care.

    Also, Harlan, I’ll respectfully point out that most of the ten items you mention have nothing to do with participation. (They’re good, but they’re not the point of this particular issue.)

    Plus, as Gilles points out, it’s completely disingenous of the AMA to assert that anyone certified is as good as anyone else. Again, either they’re unaware of reality (as repeatedly detailed by stories here) or they are aware of reality and are for some reason willfully pulling the wool over someone’s eyes.

    I’m inclined to agree with Susan’s comment – this is pretty pathetic. It’s very common in my own ACOR peer group (kidney cancer) to hear someone new show up whose (certified) doctor claims that they can handle it just fine, when in fact they haven’t learned a thing about the disease and its treatments in five years or more. That’s raw BS – it can even be life-threatening BS. No excuse for that.

    For some reason stuff like this evokes images of Al Haig grabbing the microphone and saying “I’m in charge here.” Or our Chief Executive saying “Heckuva job, Brownie.”

  4. Dave,

    Thanks for your response. First, when you look at the quality of care in medicine, it is a dynamic process that includes many important aspects, including active patient participation. As I stated in my original comments, our new era of participatory medicine must be a joint venture between patients and health professionals. This working relationship must now include active patient participation along with health care professional acceptance of this emerging medical culture. Finally, certification is not the only factor that patients may review when determining which physician or physicians that will be involved in their care. It denotes a certain level of accomplishment but is not the only criteria for an individuals selection.
    We must all be aware that this new era of health care delivery is vastly different from anything else previously used by patients and physicians. We are at the beginning of a new learning curve and I believe that we must have a new level of patience and acceptance for everyone who is involved. The key here is education and communication for the new practice of medicine.
    Finally, our ultimate goal should be the best medical practice providing patients with the best possible outcomes. We should settle for nothing less.

    Harlan R. Weinberg, MD, FCCP

  5. Thanks again for the dialog, Harlan. I couldn’t agree more about the need for people to work together with patience and partnership.

    My hat goes off to physicians who are willing to risk giving up the familiar and go for what they hope will be something greater.

    As you may have seen, a good example of such dialog was here earlier this month. We all have much to learn, and it’s a thrill to be in as Tom Ferguson’s work continues bearing fruit. Very heartening.

    Keep in touch –

  6. Joe Wright says:

    Dave and Gilles,

    If you think of the JAMA recommendations as a bare minimum they may seem slightly less egregious. For some people, knowing that they are supposed to bring a medication list and knowing that their doctors have the _minimum_ qualifications needed to be a doctor is actually a helpful suggestion. That is, for some people, it is helpful to say, “Know what medicines you’re taking and make sure your doctor also knows what medicines you’re taking; and also, be sure your doctor isn’t egregiously unqualified.”

    As I struggle with what it means to be a democratic doctor, one of my challenges is that I came into medicine hoping everyone would be like e-patients (I came into medicine from HIV work where there is a strong tradition of empowerment of people living with HIV and AIDS), and finding that many people didn’t even know how to start being _any kind_ of patient. The struggle in finding a collaborative relationship with patients as a doctor is making sure you as the doctor are meeting the patients where the patients are.

    So: there are some people living with cancer who understand they may benefit from a uterine leiomyosarcoma doctor (or the equivalent) because of the distinct behavior of that cancer vs other sarcomas. There are many others who think that because they have metastases in the bones, liver and brain that they have bone cancer, liver cancer, and brain cancer. They have to be walked through a bunch of steps before they even understand that they have a special disease much less that they would benefit from a specialist in that disease. (This is why things like local cancer support groups are so important–including in real space, not just internet space.)

    So, I agree that these recommendations are less than inspiring, and simply elucidate some very basic steps in how to be a more effective patient within a non-transformative relationship. But I have been surprised by how many people do not even understand these _basic_ aspects of how to get good healthcare quality, never mind healthcare excellence in a fluid and democratic world of high-information patients and clinicians working collectively.

    Joe Wright MD

  7. Joe,

    > I have been surprised by how many people do not even understand these _basic_ aspects of how to get good healthcare quality

    Thanks very much for the contribution to the discussion! I’m genuinely honored each time we hear the voice of another doctor.

    I understand your point, and it’s a good one. What I sorely lack, though, is what feels to me like “dumbing down” of the advice: like, since many or most people don’t even have the basics, let’s state it at a simplified level.

    I humbly suggest that when push comes to shove, there’s real harm in the oversimplified advice. Gilles’s point about needing docs who really know the specific condition is one example; our post on “All MRIs are not created equal” is another.

    I hope I’m not oversimplifying when I say that the JAMA advice rather reminds me of approaching auto maintenance by saying “Be sure you get your oil changed, and use a certified mechanic.” True, but only the tiniest tip of the iceberg.

    And, more to the point, there’s a good chance that consumer ratings of mechanics (how things worked out long term) will vary substantially among certified mechanics. (Sorry, that’s not a perfect metaphor, but I hope it communicates.)

    Let’s continue this dialog. There are important things to be created here, and this is just a start.

    I keep coming back to kidney cancer, my disease, and the patients whose doctors assured them that (for instance) they just took a refresher course five years ago. A vast amount has changed since then. How do we make it an everyday truism that patients and doctors all think in terms of shared participation?

  8. Sorry, I wrote sloppily in the comment above. Here’s a rewrite of two paragraphs:

    I understand your point, and it’s a good one. What I sorely lack, though, is a sense of adequacy of their advice; it feels to me almost like “dumbing down” of the advice to childlike simplicity: like, since many or most people don’t even have the basics, let’s state it at a simplified level – and leave it at that.

    I humbly suggest that when push comes to shove, there’s real harm in the oversimplified advice. Gilles’s point about needing docs who really know the specific condition is one example; our post on “All MRIs are not created equal” is another. I know of people whose cases did not go well because they figured that as long as they were going to an MD with plenty of diplomas on the wall, they were getting the best care possible.


    I believe people need to be aware that there are real differences in the excellence of services they can buy, for themselves and their family members. When I got my prognosis (<6 months median survival), you can bet the question I asked my peer community was not "Where's a doctor," is was "Where's the BEST doctor for this?"

    I didn't know about e-patient yet, but I knew to take responsibility for myself and not just bow down to the shingle. I've documented here before that my attitude was bent by two events earlier in life where I'd trusted two docs (a surgeon and a dentist) because they were board certified, and both turned out to be jerks.

    Okay, the day job calls - thanks again, let's keep this going.

  9. Bart Windrum says:

    Gilles and all,

    This lay person’s perspective is that the underlying conversation needs to change at its root level: “care” is not part of the delivery. The problem is that it’s literally impossible to extract the letters from the system or any conversation about it. And, the system actively asserts in various ways that it delivers care. It delivers bodily repair services.

    This is not pejorative! Provider expertise adds years and decades to our lives. But language is critically important. Especially at end of life, the language/concept gap and all that derives from it harms patient-families (I know; I’ve experienced two terminal hospitalizations and subsequently wrote a book about this all).

    Kudos to any doctor who practices Communication Algorithms — a reform proposal I suggest as a licensure/renewal requirement. I coined the phrase specifically because I want providers to understand that I understand how they are trained to think and function, and that if they can apply known skills in a diagnostic arena they can also apply these same skills in the patient-family communication arena.

    I want to add, compassionately, that providers who encounter ignorant patient-families almost have their hands tied. And that I think I understand that most providers enter the field as young adults with a sense of mission and elevated purpose; that the challenges of corporatized/insurer-driven medicine with no diagnostic code for education make it all the more difficult.

    Nonetheless, stuff like these JAMA excerpts are enough to make one gag, without the benefit of a tongue depressor. For even beyond my parents’ terminal hospitalizations, two recent curative hospitalizations for middle aged people that I’ve been intimately or tangentially involved with proved beyond a shadow of a doubt that systemically, providers workplace, habits, and orientation (“service delivery”) occurs under a paradigm ordered completely around their own convenience and not patient-well being.

    Sorry to say!

    Bart Windrum, author/speaker
    – Notes From the Waiting Room: Managing a Loved One’s End of Life Hospitalization
    – The Option to Die in PEACE (Patient Ethical Alternative Care Elective)

  10. Bart,

    Excellent! It’s not only physician communication skills that are lacking but a needed discussion throughout our country for end of life care and advance directives.The most recent numbers that I could find were approx. 27-30% of the total Medicare budget is spent on end of life care in the last year of life. Finally, if we look nationally, slightly less than 25% of all Americans have any documentation regarding a healthcare proxy, living will, advance directives… Death is part of our cycle of life. We all need to better understand this most difficult part of our life.

    Harlan R. Weinberg, MD

  11. Bart Windrum says:

    Hi Harian,

    I use a range: 25% of the $ in the last year of life on the conservative side to 30% of the $ in the last month of life on the assertive side (the latter I believe comes from AMA; I heard it in the Colorado legislature during the “208” Commission’s signature report earlier this year). Tho I don’t know if those are total dollars or Medicare dollars.

    I’m flabbergasted that in all the healthcare insurance access debate I have yet to hear any mention of redirecting/saving some of the 25-30%. It’s huge!

    Communication: altho I tend to pin the responsibility tail on providers due to their vast experience in assessing impending death (in general), it’s evident we all need to begin talking. I’m doing what I can to promote the conversation, using the conceptual and lingual reframe I offer in my work. It’s clear to me that what we need, and what the conversation offers, is *lead time* for patient-families to come to grips with a demise in enough time to truly manifest the resolve to die in peace.

    But that’s my EOL focus…where JAMA values like those presented above impact citizens with particular harm (I use the word purposefully) due to irreplaceable, lost opportunities–precious moments–in the run-up (down) to our loved ones’ death.

    Bart Windrum, author/speaker/end-of-life reform advocate

  12. Bart Windrum says:

    Additionally: data is showing that advance directives are not all they’re cracked up to be (tho I support everyone having them anyway). Several crucial components of the scene that’ll trip you up lickety-split:
    – receiving treatment direction from our dying loved one during his/her demise. My patient-family was advance-planned, cohesive, open, present, medically compliant, and still I wound up making an unsupported, unassisted, un-forecast pull-the-plug decision I never dreamt I would have to make
    – and why? do solely and completely to two failures:
    1. a complete lack of forecasting during a serious, ultimately terminal elder hospitalization
    2. a total lack of disclosure regarding the gray zones at the intersection of patient directives, the treatment plan, and provider prerogative around the application of life support technology (“treatment” whenever providers deem to identify it as such). In short, ethical slicing and dicing.

    Communication, indeed!

    Bart Windrum

  13. Bart,

    Thanks for your comments. End of life care is probably one of the most difficult decisions to be made by a patient, family member or significant other. Our current system is not perfect since any of these directives may be reversed by the patient or his/her proxy. The important message, is that there needs to be a better way to look at end of life care other than being in an ICU, hooked-up to all of the advanced life-support modalities. I believe that there comes a point in time where quality of life and comfort care are so vitally important. I agree with your concept of lead time but this discussion must begin prior to a catastrophic medical event. Finally, I am very sorry that you were meant to feel so isolated and unsupported during your personal medical crisis. This is unacceptable in today’s practice of medicine given so many of the supports that are available–clergy, hospice, patient care giver centers, hospital ethics committee members, treating physicians and nurses… These individuals are there for a purpose and patient/family support and comfort are at the top of the list.
    I know how difficult this is, since after 22 years of working in a busy medical ICU, we face these challenges on a daily basis.

    Harlan R. Weinberg, MD, FCCP
    Author, “Dr. Weinberg’s Guide to the Best Health Resources on the Web,” Harper Collins, 2008

  14. Susannah Fox says:

    Harlan, Bart,

    You might be interested in this new site Engage with Grace: The One Slide Project. Matthew Holt put their idea into action (maybe for the first time since its launch?) at the Connected Health conference on Monday, putting the slide about end of life decisions up on the big screen for everyone to consider.

  15. Bart Windrum says:

    Susannah, Thx. Of course, all our activity is the thin edge of the wedge to pry open social discourse on a personal, community, and national scale.

    Harlan, I don’t know that we were meant for it, but Notes and PEACE evolved after my NICU nurse sister and I, who thought we had learned the ropes in 2004, experienced the same and worse in 2005. I call it the crucible of terminal hospitalization. I can only imagine working in an ICU and dealing with an unending stream of demises, from all walks of life, everyday. You have my utmost respect for doing it (tho I’d have to know how well you practice what I call Communication Algorithms before fully endorsing you :).

    On the lay side, I’ve boiled the issue down to an unexamined and misplaced notion of heroicism. If we ponder just a little, we quickly understand that medicine’s beneficence has extended our lives by decades, during which we’ve been heroic; sanctified life, for those who want to frame it that way. We’ve done the heavy lifting. All of use; the “white hat” has a very large brim, so to speak.

    A year after Dad died I initiated a phone conversation with the (RN!) patient liaison I’d mentally dismissed when she introduced herself serendipitously in the hall (back then I had no idea that chaplains hold the key to a hospital’s ethical kingdom, or that ethics committees existed, and we had learned a year earlier that engaging nursing management was utterly futile). We brought up the medical record and mused. She asked me what she might have done to have made a lasting impression upon me, and I suggested language and demeanor that, in my case at least, would have caused me to save her card and call on her. I like to say the finger of responsibility points 360º; we’re all part of the system. But/and: the lack of support occurred in a Jayco 100 hospital (as the banner-billboard proclaimed from the rooftop).

    Bart Windrum, author/speaker/end-of-life reform advocate

  16. Bart,

    I am unable to find your “Communication Algorithm” as you have described. Where on the Internet is it located?

  17. Bart Windrum says:

    Harlan, it’s inside my book. Not trying to do book marketing here, but that’s where it is. Essentially I’m saying that providers are trained to make decision tree assessments diagnostically, and that the same skills can and ought to be required to assess the range of communications required of any provider in the due course of their practice.

    Gotta run to a conference; I’ll try to tune in before to long.

    Bart Windrum

  18. Bart,

    I am waiting for your book to arrive. First, at my hospital, Northern Westchester Hospital, Mt. Kisco, NY, we try very hard not to have an “Institutional Death” for the patients who require end of life care. Our resources are extensive including, The Ken Hamilton Patient Care Givers Center, Clergy, Patient Advocate, Hospice, Nursing Support, Case Manager Support, Physician Support, Ethics Committee… These supports as well as others are provided by the hospital, in the attempt to ease the overwhelming burdens of a loved ones death. To the best of my knowledge, no patient or patient’s family ever feel abandoned during this very difficult time. The focus needs to be on open and continual communications between healthcare professionals, patients and family.


  19. Bart Windrum says:


    btw, I have not set forth any specific “communication algorithm” in Notes, rather, I posit the reform in general.

    Thank you for purchasing Notes. I have some questions for you that’d probably be best posed offline so as not to use this blog as an email proxy. If you email me from the contact page of my website we can proceed from there.


  20. Bart Windrum says:

    Harlan, one question I can pose here that’s relevant to this page’s context is, taking NWH’s Best Kept Secret ad at face value, how do you all do it? My two terminal experiences plus very recent participation (last several months) in a couple of acute curative hospitalizations in both Denver and Chattanooga were rife with an absence of support and comfort about the aspects that mattered most. Not saying a total absence, but cracks in the system that function like crevasses on Mt. Everest and reinforce my viewpoint that hospitals orientation is for the convenience of those who work in them. So if your hospital has solved those problems you’ve got an institutional secret worth exploiting, sharing, or both. Perhaps it’s simply your place’s culture.
    ••• I know I sound terribly negative; the two new hospitalizations were of RNs as patients. So all involved know the ropes — and still experienced lapses in (absences of) care with real negative impacts. Despite all our knowledge we still couldn’t advocate effectively for the things that we were most concerned about. Very frightening.

  21. […] Quality of Care & e-Patients – Commentary by Gilles Frydman at e-patients.net. As he points out, the American Medical Association continues to demonstrate a distinctive approach to change. […]

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