Are e-Patients expert in their own diseases?

As an e-Doctor, one with some IT literacy, I welcome the e-Patient movement.

I think patients should be equipped, enabled, empowered, engaged, equals, and emancipated, as Wikipedia explains.  The link also adds “and experts” and here I have a problem, not because I don’t think patients should have access to knowledge or know a lot about their own disease, but because knowing one pattern of pathology, i.e. your own, does not make you an expert.

No more than, for example, a petty thief can call himself a criminologist.  An advocate, yes, certainly, but “expert” has the connotation of knowing everything there is to know about something. There may be expert patients out there, but I believe that denotation demands explanation, and e-Patient advocates and their blogs need to make sure that their information carries disclaimers that they do not have medical training or qualifications, and that the contents thereof are opinions, not medical advice. What makes someone an expert patient? I am an expert in sinus surgery, because I do the surgery so often.  I have also had the surgery myself, so I know what it feels like.  So I could be both.

My training took me twelve years of dedicated study, and another ten years of experience.  I base my decisions on the thousands of patients I have seen, with the collective knowledge of my training, continuing professional education, and experience.  For the common conditions in my field, I have seen the whole range of patient experience, from near disaster to an easy cruise.  I’m regularly surprised by diseases that present differently to the lists of symptoms in the textbooks, that respond unexpectedly well to treatments, or do not when there is little reason why they should not.  More than once I have “written off” patients as doomed to die, only to see them well and healthy years later, none of it due to anything I have done. As an “expert” I am surprised by how often I am wrong.

The longer I work as a doctor, the more I realize how little I know about why some patients do well and others not. I have learned not to prognosticate unless I really have to, or to be prescriptive or dogmatic in any sense, because there is a good chance I may be wrong.

So, to see e-Patients advocating certain treatments above others, saying “Do this and not that” based on their experience of one, is very unsettling.  I am medicolegally liable for the advice I give.  I don’t believe e-Patients should dispense medical advice without being equally liable for it.  It is a dangerous and counterproductive measure to ascribe success in overcoming serious disease against the odds to anything other than statistical probability. Because the guys who don’t do well cannot be there to offer their perspective.

Sure, having good and dedicated doctors helps, and access to new treatments, involvement in clinical trials etc. may make a big difference.  But that is no hope to the sufferer who is not winning the battle, or his/her family. The survivor’s views have a very real bias that may not be helpful to others with a disease.

For the same reason, anecdotal case reports in medical journals are useful in describing the wider spectrum of disease experience, but cannot be used to modify accepted treatments.  For that, we need properly done clinical trials involving hundreds or thousands of patients. e-Patients, for all their enthusiasm, may not know this.

On the other hand, the establishment of support groups, websites, educational forums that facilitate, share symptoms, and share experiences without necessarily offering advice are all great initiatives.  I welcome them.

The success of the e-Patient movement will depend on partnering with doctors, preferably e-Doctors, and developing systems around technology that benefit both parties and enhance medical care.

The true potential of the e-Patient movement is to set a new standard of care for medical practice.  No longer is medical information privileged.  Doctors need to beware for this reason – our standards of care have to meet the expectations of the educated, empowered and engaged patient.  We need to become e-Doctors.

An e-Patient will always need an e-Doctor.  We may not know as much about the nitty-gritty’s of your particular complaint, and will not feel it as you do, but our experience must count for something. The same can be said for our availability.

After all, Google does not do ER visits.

Martin Young is an otolaryngologist and founder and CEO of ConsentCare.

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  • Jackie Fox

    Excellent, thoughtful post and I couldn’t agree more. Patients know more than ever, and like many others, I did a lot of online and book research when I was diagnosed with early-stage breast cancer. But “e” doesn’t stand for “I know Everything.” That’s a large part of the reason I resist calling myself an “e-patient” and prefer old school “patient.” (Plus it just seems so darn trendy, which turns me off.)

    I loved “An e-patient will always need an e-doctor.” That’s a great line.

    Jackie Fox
    Author, “From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer”

  • pheski

    The way I look at the issue of expertise in health care is that both the clinician and the patient bring necessary but not identical kinds of expertise to the process. Just as the e-Patient’s study of their specific health issue does not result in the same expertise I have gained from a broader study of multiple health issues and from experience with them over time, neither does my experience as a history taker or examiner or husband or father or community member provide the expertise the patient can contribute about how the process is manifesting itself in their life.

    We are both experts, and the comfortable and collaborative sharing of our expertise benefits us both.

  • Michelle W

    Agreed: I too have been a bit put off by the whole trendy sound of “e-patient,” not because I’m not for patient advocacy, but because it makes it sound novel rather than a natural progression or need in all areas of medicine. I think this article is one of the more sensitive and thoughtful explorations of the subject, and I too liked that line about patients needing doctors, because in the end, it’s true. We should all be seeking ways to collaborate and build a better system together. Doctors are a necessary part of that process.

  • Dr. S. M. Akerkar

    Thoughtful post indeed.

    The number of e-patients is on the rise & will keep increasing. You are absolutely correct in stating that ‘No longer is medical information privileged’ in this information era.

    I’m facing a different type of problem with e patients. That of the negativity on the internet regarding chronic autoimmune diseases. I’ve highlighted this in my blog ( ). So many of them (e patients) have already given up the hope of doing well & scared about the side effects by the time they come for a consultation. This in fact defeats the very purpose of empowering them through information on the net.

    As you rightly said, we need to develop systems around technology that benefit both parties and enhance medical care.

  • Patricia Flatley Brennan

    Thanks, Martin and Kevin, for your interesting post on expertise and the patient’s experience. An individual’s health and illness are perceived in many different ways, depending on the perspective of the perceiver. To the involved person, it may be an all-consuming experience or a small blip in a very full life. To the clinician, it may be a diagnostic challenge, calling forth all levels of discernment and clinical knowledge. To a concerned family member, it may be a fearful disruption of a once-well-ordered life. At Project HealthDesign, we recognize that each of these perspectives are both correct and incomplete.

    We agree with Martin. Patient’s are likely NOT experts in disease – their own, or any others. However, they are ABSOLUTELY EXPERT in their every-day lives, and in some of the ways health and illness intersect with living. Observations of Daily Living (ODLs) are the cues patients use to get a sense how they are doing. ODLs may be the number of nights of un-interrupted sleep or the effort exertion expended during a daily bike ride.

    Curing disease or managing chronic problems requires the combined skills and efforts of professionals, patients and the people in their lives — experts, all, but in their own special but very limited view. Patients deserve the full spectrum view. Let’s make sure it happens!

  • sara

    I think as a ‘consumer’ it behooves us to research what the best options are, what gives us the biggest bang for my buck. Why should it be anything less when it comes to our most important asset…our health? Physicians do bring a lot of knowledge to the table. I will not under value that at all. Clinicians are no longer considered Oracles. When a relationship exists it is about coming together to work together as a team, rather than how is versed in this or that. It is in mosts nature to question what they do not know. It is a form of unintentional ignorance I will agree. I liked the point that all people respond differently to treatments, and to advocate what works best for them might not be best for another. I do not think the e-patient you describe would know this tid bit as a layman.This needs to be communicated profoundly. When I think in terms of these individuals looking for answers want to hear what worked for one, who knows it could work. The difference in the layman advocating best treatment is at best coming from a non-clinician. For all practical purposes Providers are the ones who are the prescribers, and diagnositicians that order tests, and treatment. The layman does not have this responsibility. Other than potentially being wrong, they have little to do with liability. It would be different if a clinician advocated cutting off a toe, to get rid of the pain in an ear, right? You tread on a slippery slope. There are patients out there that can be more than a novice regarding that one pathology through intense research. I think you are underestimating the current patient today. Today’s population are educated, exeperienced, and valuable in other ways as well. E-patients do not have access to research material as clinicians do. This is one reason that this situation does occur. YOu are abosolutly correct bias does occur, regarding treatment with the layman. I think doctors to meet the standards of the E-patient, but you are right they will be a challenge. I see it as a shift in health care delivery that if properly managed will provide better care. I would love to be able to pick up the phone and actually speak with my primary. I realize that this is not always the case. I have discussed this with co-workers and have found that patients are very intimidated by a doctor. Not just because of the education, but that the lingering concept that the physician is the all mighty, all knowing, that did not get questioned is still here. The baby boomers are knocking the last out of the ball park as this is the last generation that will have this esteem. The younger have a very different concept of health care delivery. I am getting off my soapbox now.

  • DCPatient

    Dr. Young, thank you for this thoughtful perspective, but I want to take issue with 2 points.
    (1) You say ” The true potential of the e-Patient movement is to set a new standard of care for medical practice.” As an e-patient I believe the true potential of the movement is to create a more satisfying patient experience and improve the healthcare of patients. Your definition is like saying the point of the auto industry is to benefit car companies not drivers.
    (2) You misinterpret the expertise e-patients are claiming for themselves. I am an expert in me. I have studied this n=1 for 27 years so I know that a blood pressure of 120/70 is not normal but hypertensive for me, that metabolize certain types of sedation very quickly so need to be monitored closely or given more medication than may be usual for my weight, etc. I have thousands of longitudinal data points never to be found in a medical record, some of which is background noise, and some can be essential to an accurate diagnosis or treatment plan. I have the advantage of not having to read every article in every journal, but only the ones about that pertain to my particular manifestation of my disease. That is the expertise I want my doctor to respect and leverage in my treatment options.

    • Kelly Young

      Hi Donna,

      About your point 2: I can’t speak for Martin, but I thought he was referring to those who present themselves as “expert” patients to inform or advise other e-patients. I’m pretty sure he’d agree that you are the best expert on you that there could be.

      I thank you for the other point which makes me think a little harder about our goals. I had thought those meant the same thing, but I realize I’ve not thought about it enough.

      • DCPatient

        Thanks, Kelly. I do agree that patients should be careful to frame advice as their experience. Although for some patients like myself, my experience in transplantation includes working for UNOS, talking to patient in clinics and infusion labs, and online, attending medical meetings, advising on clinical trials, consulting on pharmaceutical marketing in the space, and speaking to physician KOLs on a regular basis, many, including FDA for which I am a voting member of advisory committees, would consider me an expert. There is a new type of patient coming and in this new role we do have to act responsibly.

  • JW Bellicant

    Nobody knows my body better than me. My blood pressure always runs 150′s over 90. That’s normal for me and I feel fine.

  • doc99

    Can the e-Plaintiff be far behind?

  • Martin Young

    Dear DCPatient

    When I speak about ‘medical practice’ I mean both sides of the equation. If it gets easier for patients, believe me, it will get easier for doctors. Forgive me if I was unclear.

    You may be an expert in ‘you’ but not in someone else with the same disease. So what works for you may not for another person, and I think it is risky to broadcast what is a very personal ‘experience of one’, and not what doctors get to see, i.e. more of the wider spectrum – that is the point I’m trying to make.

    • DCPatient

      Martin, those your remarks indicates a bias that clinical expertise is the only expertise relevant in improving a health outcome. I grant you that 99% of doctors will win out there in most specialties. Although I’d rely on the information from an experienced fertility patient over the average PCP or GYN. Sometimes in this new age the asymmetry of information and motivation favors the patient. You weren’t born a doctor, you studied. Many of us do too. As many of us have merged our personal and professional experiences we may talk to/meet hundreds of other patients and dozens of physicians in the course of several years. It is a different type of “training” but can provide more than an “experience of one” perspective. There is also expertise in coping strategies, expertise in the logistics of balancing chronic disease and work/life, expertise in adherence strategies. While yes, patient advocates should give context to their recommendations and are better off arming a fellow patient with questions or a process to consider options I do push back on the assertion that
      patients can never be experts.

      • @cascadia

        There is one area where patients are nearly always the “expert” and that is patient preferences and what outcomes matter to them the most. It is actually in fact often just as important to know who the patient as what their disease is.
        Sherry R

        • Martin Young

          Sherry – I think you have condensed it all down to this point, and I agree. But the longer someone battles with an illness the easier it gets to assume that role as expert – I assume.

  • Christine

    JW- Hypertension didn’t get the nick name “the silent killer” for nuthin’

  • Lucien Engelen @zorg20

    Great discussion started by great perspective. E-patients are here to stay and “at least” toss in perspectives that sometimes have been forgotten. In my presentations i adress patients in general “experts is HAVING their disease”, as HC professsionals we tendens “to know what patients Think, experience, puzzles them etc. More and more programms in our Hospital (Radboud University Nijmegen Medical Center, the Netherlands) show that interaction with patiënt early in new programs benefit also from e-patients’ advocacy.
    Next in this discussion might be the question if we are talking about e- Or i-patients.

  • Gilles Frydman


    your post made my blood boil a few days ago. So, I took the time to cool down and prepared what I hope is a cogent response. Your opinion is definitely welcome.

  • Martin Young

    Since writing this post, I have immersed myself in the epatient movement, joined the Society for Participatory Medicine, and even joined a group on the site, looking for info for a colleague with cancer. What I have seen is seriously impressive!

    I still stand by my original argument, that the right to dispense medical advice should be earned, and that everyone involved in social media in issues of health should carry a responsibility that the information they share is correct. Doctors are accountable for their actions – where is the accountability in other medical, non-doctor sites?

    Having said that, the wealth of information in the participatory epatient groups is immense, and I realise that the number of people involved is likely to separate out good recommendations from bad, i.e. the members ‘police’ themselves, making sure advice is accurate. I’m very impressed.

    In essence, my reaction to the epatient movement, knowing very little about it, and even being supportive, was perhaps based on gut-feel, professional pride, and maybe a bit of self-preservatory instinct. I suspect many, many doctors share my feelings to some extent. It’s no surprise, given that the profession is under attack from all sides, that we are more defensive than we should be.

    Back to the original title, I guess ‘expert’ is too limiting a term to describe what doctors and their patients can combine in dealing successfully with serious disease. The level of expertise is different, as is the level of experience, but of equal merit.

    Accepting this should allow doctors who do an opportunity to practice medicine with ‘partners’ rather than just ‘patients’ – to the great benefit of both.

    Thanks to everyone who contributed!

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