When Patients Band Together: Far From a Disgrace

When it comes to news sites, I love scanning readers’ comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me).

One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how clinicians are tapping in to existing networks of patients. See: “When Patients Band Together: Using Social Networks to Spur Research for Rare Diseases; Mayo Clinic Signs On.” Reader comments filled in blanks left by the article, which was a lovely introduction about one example of peer-to-peer health care, not a definitive guide. The article — and the comments — are having a significant impact, as this comment from Katherine Leon shows:

It has been a tremendously exciting week. We’ve heard all sorts of wonderful stories. An ER doc read the article in the morning, and that afternoon, realized he was treating a woman with SCAD — the first case he’d seen in 9 years. Women with recurrent SCAD are sharing the article with their doctors, and vice versa. Men are benefiting too; a cardiologist in Italy contacted Mayo about a man and woman being treated for SCAD in his cath lab. They are applying to the virtual registry.

So as you say, the power of patient groups works!

Indeed, the power of patient groups is in full effect here, but so is the power of the mainstream media. The Wall Street Journal has a big megaphone and, in this article, used it to spread the word about this one patient network. Will it spark more coverage of other patient networks? Will it spark ideas for other clinicians and other patients who want to tap into the same zeitgeist of shared learning? Those are the questions that came to my mind as I read the comments and thought about the roadblocks and opportunities which face participatory medicine.

I was also struck by the following sentence, which began a lengthy comment about the need for universal health care:

I find it a disgrace that in today’s world, these women who are and have been so gravely ill, have had to become their own advocates in order to improve their diagnoses.

A disgrace? That is not a word that I would ever use to describe people with expertise who work together on a shared problem. But let’s hear more from this commenter:

There should be a protocol within the doctor’s practice, to assure these women are given what they need. They should not have to resort to online articles for their information nor should they be in the position of having to “band together to spur medical research.” Their job should be to get well. Their doctors and elected officials should be doing the heavy lifting.

As I stated at the top, I welcome the chance to read people’s unvarnished comments since I always learn something. Here, I’m learning about how people outside the world of patient networks might view this story and how far we need to go to communicate the reality of the situation. I don’t disagree that in a perfect world, there would be a “protocol” to get people the care they need. But sadly that is not always the case. People often do need to study up, talk with fellow patients and caregivers, search online, and otherwise do the “heavy lifting” involved in health care decision-making. In fact, I worry about the people who do not have access to high-quality information they can understand. For starters, please see: Internet access drives information access.

I’d love to hear what other people think about the WSJ article and comments. I’d also love to hear about other examples of pop-up comment threads related to peer-to-peer health care, participatory medicine, etc. What are you seeing? What are you learning?

Please, um, leave a comment!



Posted in: patient networks | pt/doc co-care





23 Responses to “When Patients Band Together: Far From a Disgrace”

  1. Susannah Fox says:

    Faithful readers of e-patients.net will note that this is the second time we pointed out this WSJ article – the first was on the day it appeared, August 30, 2011:


  2. Aurelia says:

    Hi…I can’t see the comments, or rest of the article because WSJ is behind a firewall, but I do kind of understand the sentiment of the commenter.

    It should be a dramatically better, almost perfect world by now, considering how much money we spend on healthcare. The internet and computers and video have existed for many years now, yet most “official” medical websites are poorly done. Heck, pamphlets and the printing press have existed for hundreds of years–yet basic handouts or even complicated handouts, books, magazines published by hospitals and medical organizations are terrible.

    Patients are STILL, to this very day, getting blamed for not following instructions by doctors, yet many patients have low literacy, vision, hearing, speech problems, speak another language besides english, need information repeated and demonstrated, and may not have money, access to care, access to pharmacists, or even just feel they have the right to question an authority figure, like a doctor or a nurse.

    Patients like myself can advocate, research, travel, demand better care, or just search Youtube properly to figure out how to use the new inhaler we received. (the most godawful craptastic instructions, complete with stick figures were in the patient instructions, thank god for Youtube or I’d still be wheezing)

    But as long as the health care system requires literacy, education, wealth, or self-advocacy to not be accidentally killed then all patients are at risk of dying. Doctors and hospitals could really really do better with their own websites, and making simple videos, pamphlets, mobile websites, basic instructions. Accurate and helpful, at multiple levels of comprehension, in multiple languages.

    And yes, teaching doctors and nurses to communicate better and be more aware of patients who might be afraid to ask a question of someone in a white coat.

    I truly deeply wish that would happen.

    • Susannah Fox says:

      Darn, I feel like it’s been a “now you see it, now you don’t” situation all week — sometimes the link connects me to a full-text article, sometimes it connects me with the paywall version. Sorry about that! The comments, for me anyway, are all visible, but that’s only half a loaf.

      As for your substantive comments, all I can say is Amen and thank you.

  3. Laura says:

    As the other patient interviewed in the WSJ article, I can talk a little bit about what the impact looks like from my vantage point.

    On the WomenHeart messageboard, we are getting new women posting almost every day. One particularly poignant story was from a woman who’s in her 70s now and had a SCAD back in 1988, 23 years ago.

    Until she read the WSJ article, she never knew that any other SCAD survivors like her were out there. Reading her story broke my heart, thinking about this poor woman, all alone with her diagnosis for twenty-three years.

    And as you’ve seen, there are women popping up in the comments to the WSJ article as well, women who didn’t know any other SCAD survivors, whose doctors told them what a rare thing it was and how lucky they were to be alive, and to go home and live their lives.

    Now these people know that they’re not alone, and that we may actually get some answers, someday, as to why dissections happen (and whether or not they can be prevented).

    This is why, after my own heart attack and SCAD in March of ’09, I got involved with women’s heart disease education, outreach and advocacy. I want to reach not only other women with heart disease, but specifically people who’ve had dissections and are lost, scared, and frustrated.

    Having a rare disease diagnosis doesn’t have to be a lonely place, but often it is. We’re slowly changing that, and with more people connecting with each other online, hopefully the process will speed up.

    But that brings up the problem of people who don’t have and can’t afford internet access; the ability to get online is a sharp have/have not divide in the US. For this reason, I still attend area health fairs and expos in person — though I have to say that I’ve never met another SCAD survivor at one of these events.

    Then again, with something rare like a SCAD, it IS going to be rare to find another survivor in person. But I’m still putting myself out there in person, in addition to the work I’m doing to connect everyone online, because who knows if the next person who walks up to my display is like that seventy-something year old. For her, and for everyone else out there who feels so isolated with their diagnosis, I go to these events.

  4. Katherine says:

    Hello Susannah. Thank you very much for writing about our story, and in particular, the thought- provoking (is that putting it too mildly?!) WSJ comments section.

    I have struggled all week with my feelings about the comment you reference in your article. To me, the “disgrace” begins with our growing population of in-need Americans and the nation’s struggling education system. Even with universal healthcare, many ill-equipped Americans wouldn’t be able to make the choices necessary to prevent illness or navigate the system for optimal care.

    And that is where the Internet comes in. Laura makes a good point about access. And for those of us fortunate enough to have it, the Internet offers hope and sanity through search engines and online communities, such as the WomenHeart forum. As a virtual medical library, the Internet helps me take responsibility for my family’s health and make wise choices as a consumer of medical care.

    The SCAD project was born from my search for data EVERYWHERE about a rare condition, not from problems with my health care plan. (That’s a whole ‘nother story!)

  5. Lee Aase says:

    Thanks for your post, Susannah. I agree with you that this is far from a disgrace. I think it’s a huge sign of opportunity for the future. Rare diseases like SCAD have always been underfunded for research, and the logistics of gathering enough patients for a study have been too costly and burdensome to be practical. I think this study shows how things can be different.

    “Disgrace” implies that bad systems or venality are behind the struggles of patients with rare diseases. To say they “should not have to resort to online articles” and that “Their job should be to get well” is all nice sentiment, but it doesn’t accomplish anything. The reality is that with these social networking tools we can harness the motivation of patients to become partners with researchers and clinicians. I think that’s entirely a positive development.

    Full disclosure: I’m one of the authors of the paper in Mayo Clinic Proceedings that led to the WSJ article.

  6. Susannah Fox says:

    Laura, Katherine, Lee,

    Thanks so much for adding your perspectives!

    Unfortunately, the full-text version of the Mayo Clinic Proceedings article is behind a paywall – any chance the full text could be posted publicly for more patients and other interested parties to read?

    In the meantime, here is the abstract:


    And here is a very good video interview with Sharonne Hayes, MD, a co-author:


    I must say I was tickled to see that another co-author on the study is named Dr. Tweet :) Kudos all around to the team who brought this study to fruition.

    • Brian Loew says:

      The 100 women who banded together to focus attention on SCAD were able to not only because they are connected through the online community http://bit.ly/ooyGRF and also because they did not require permission to do so. No bureaucracy stood in their way; rather, they identified their own symptoms and similarities and called attention to their discoveries.

      Members self-organized and made this incredible discovery on their own. We were delighted, but not surprised, to see this process unfold. Patients in our online communities–particularly those with rare diseases–regularly conduct research along the lines of what Katherine and Laura spearheaded. Those patient-driven research efforts drive diagnosis and treatment options.

      This kind of activity by patients is the opposite of disgrace. The history of medicine is filled with discoveries made in parallel to research sourced through ‘traditional’ methods. The NIH Office of Rare Disease recognizes 7,000 rare diseases, and identifies over 30 new ones each month. To suggest progress should originate only from physicians is not only unrealistic; rather, it ignores a powerful source of discovery: the patient.

      It’s heartening, in light of the WSJ article, for us to see new “SCAD Sisters” who join the community introduce themselves by saying their physicians showed them Ron Winslow’s article and prescribed the online community to them.

      • e-Patient Dave says:

        Brian, your “they did not require permission to do so” reminds me of a remark at the Connected Health conference in, I believe October 2008 by internet visionary Clay Shirky. Back when all of this was pretty new to most folks, he said: “The patients on ACOR don’t need our help, and they don’t need our permission.”

        Ain’t THAT the truth. Among other things, by definition, patients know what they want to talk about. And the internet removes prior barriers of cost, distance, and finding each other.


  7. Laura says:

    Dave, you are so right when you say, “the internet removes prior barriers of cost, distance, and finding each other.

    Woot, indeed! I would have been so lost had I not found the SCAD community a few days after I got home from the hospital.

    The first two weeks back home were the worst; I’m somewhat of a geek and so as soon as I felt able (which was pretty much the next day), I was online and researching my condition, being freaked out by morbidity statistics and such.

    I was so worried about having another dissection that for the first couple of weeks after my SCAD and heart attack, I would keep myself up at late as possible, to avoid going to bed, until my eyelids were drooping and I absolutely could not stay awake one second longer.

    My fear was that if I went to sleep, I wouldn’t wake back up again. My husband also confessed that during this time (and for a bit after), he would sometimes just watch me sleep and breathe, to make sure I was, in fact, still breathing.

    One thing that finally helped me calm down was talking with other people online who had not only survived their dissections, but were several years out from their events and not only were they surviving, they were thriving. The first of these fantastic women to reach out to me lives in New Zealand. On the other side of the world.

    I don’t know what I would have done had I had to live alone with my diagnosis, feeling like a freak of nature, a footnote in a medical textbook, something that’s covered for two minutes in a student’s introductory-level med school class then never mentioned again.

    So yes indeed, WOOT. :)

    • e-Patient Dave says:

      Good to meet you, Sista Geek. :)

      One thing I hear in your comment is, as I said in my TED talk (regarding ACOR), “Patients know what patients want to know.” More precisely, patients know what’s important to patients.

      Healthcare has an essential myth, a superstition, that all genuine value arises from the (genuinely) brilliant medicos. None of us who’ve been saved by them want to ditch them – of course. But their technological expertise doesn’t address the other aspects of our experience. And the thing is, our EXPERIENCE only shows up as important if the industry asks us “HOW ARE YOU DOING??” and LISTENS.

      Yeah I’m shouting. I have a question in my recent slide decks: “If the microscope’s happy, but the patient’s not, has CARE been achieved?”

      And: “Who gets to say what care *is*?”

      Great example: a year after my own kidney cancer, the Kidney Cancer Association (one of those organizations that seems largely to be in business to keep itself in business) conducted a “patient day” in Boston that was a classic example of a curriculum put together by medical insiders, telling the unwashed (patients) what THEY like to talk about. Nowhere did they address the #1 question that (in my experience) is top of mind for every newly diagnosed patient: “Am I gonna die, now??” And as you surely know, the answer we want isn’t expressed in median survival, it’s at the level of concerned coffee table talk.

      It can be done. I spoke yesterday at the Cleveland Clinic, and their CEO talked about how they’ve turned the culture of the place inside out in three years. They had been in the 20%ile range in patient satisfaction (HCAHPS scores) despite having some of the best docs. They made a slew of changes, and in just three years that 40,000 employee organization is now in the 90%ile range.

      And they did it by listening to what patients were concerned about, even if it made no “rational” sense to the Chief of specialty X, Y or Z.

      • Laura says:


        I’m so with you on the disconnect between what patients want to know and talk about, versus what the medical community wants to tell us.

        I had several instances of that during my 12 weeks of cardiac rehab where the medical staff were just going through the same rote program for all of us.

        One day in particular stood out for me; it was a class on taking our heart medications properly. At one point during the class, the nurse looked out at us and said something like, “Let’s face it — you all did something to bring yourselves here.” I was completely taken aback (and also reminded of Grosse Pointe Blank: “If I show up at your door, chances are you did something to bring me there.”)

        As a side note, I see that we’re both going to be at Mayo’s Social Media summit — I’m looking forward to meeting you in person!


        • Terrific reply, Laura. I look forward to meeting you – remind me that you’re the one who said this!

          I just don’t know what to do about the drudgery side of healthcare. There ARE some patients who, fully informed, make choices that don’t work. I saw a chart yesterday that lifestyle decisions account for more health problems than anything else – environment, genetics, etc. I’ve spoken to workers who started out inspired and have gotten tired of beating their heads against the wall. I can understand that.

          But then there are patients who are NOT slugs. To vent frustration – or perhaps a genuinely bad attitude – on those patients is beyond unprofessional, IMO.

          And what is care if it’s lost compassion?

          It surely seems from your story that the worker has lost all hope (or never had any) of patient engagement / participatory healthcare.

          Bottom line for we who want to improve the situation for others, what can we do about it? All change requires starting where you’re at. How do we start?

    • Susannah Fox says:


      I have been thinking about your comment all day, it affected me that much. The idea of not being able to go to sleep for fear of another dissection – ugh. And I can absolutely relate to your husband’s wish to stay up and watch you breathe – been there, with my kids, at least. What a gift to be able to talk with other people and allay your fears! Every time I hear a story like yours, it feels like news. Thanks so much for sharing it.

  8. “In fact, I worry about the people who do not have access to high-quality information they can understand.” As I move through the patient universe, that is the thing I most often wonder about (outside of my own direct concerns) …what about those others who don’t ask, question, speak out, research. Or, have resources (not necessarily money) hutzpah. The whole medical insurance piece is another large gooey bucket of issues. It is a brutal world out there. I am glad there are small revolutions out there of people banding together and making a difference.

    To Dave’s point. “It can be done. I spoke yesterday at the Cleveland Clinic, and their CEO talked about how they’ve turned the culture of the place inside out in three years. They had been in the 20%ile range in patient satisfaction (HCAHPS scores) despite having some of the best docs. They made a slew of changes, and in just three years that 40,000 employee organization is now in the 90%ile range.”

    I hope large institutional hospitals take note here. They by in large are machines even with top Drs (I only have the context of orthos). Each time I keep trying to go back to them I just get frustrated.

    Listening to patients is important, but I want to see things on those surveys go beyond … ‘Did your wait time meet your expectations’ or ‘was the receptionists caring about your visit?’…thing. Give me more critical issues!

  9. PS: Did I say thank you for sharing. As usual a wonderful insightful well written piece.

    • Susannah Fox says:

      Thanks! The article & the study are stellar, but that “disgrace” comment provided the twist I needed to write about it and work out some new thoughts about where we are on the adoption curve. And of course I’m loving our own comment thread – continuing to learn as we go!

  10. I’ve learned huge amounts about the temperature and prevailing winds when a cross-post on KevinMd hits a nerve (I try to laugh through the pain of reading ;)
    Often at its core – as with this example – it’s the difference between (author’s)intent and (readers’) interpretation.
    This word, disgrace: so glad it prompted you to write; loving learning the depth and breath of emotions this word evokes.
    (ps: I know eventually I’ll get to read the WSJ article.) thanks Susannah!

  11. Brian Loew says:

    Kathy, here’s a link to the full text of the WSJ article: ‘When Patients Band Together’



  12. Katherine Leon says:

    Thanks, Brian, for posting the full text link. It has been disappointing to know so many people are NOT reading the story. I’ll have to nudge WSJ for “pay per view”! What’s the point in on-line journalism if no one’s reading!?!

    RE: earlier comments about patient empowerment, there ARE seemingly insurmountable obstacles, I agree, but the danger in my view is the focus on what “should” be. In my experience, the only way to make change is to accept the fact that “it is what it is” (borrowing from a Pre-K teacher) and then just DO something about it (paraphrasing Nike).

    Background: I started searching for other SCAD survivors on the Internet in 2004, and finally found my first sisters on the WomenHeart Online Community in 2006. Because of one health issue and another family situation, I wasn’t able to attend the WH Science & Leadership Symposium at Mayo Clinic and approach Dr. Hayes until 2009. In those many years, threads about SCAD would come and go on the online community. In 2008, I worked with a SCAD survivor in Israel to start a study with one of her cardiologist’s graduate students. Sadly she disappeared from our lives. Did she suffer another SCAD and die? I haven’t been able to find out.

    My point about the passage of time is that the undercurrent to each individual thread was that “something should be done.” We all were experiencing the same treatment, the same loneliness, frustration, fear … but SHOULD never gets anything accomplished. And in the case of a condition like SCAD — that even the medical community didn’t understand — research had to be the “do it” resolution. I’m so fortunate that I could be the messenger to present all the wisdom and experience of the SCAD ladies to Dr. Hayes. She and Dr. Tweet are certainly doing the research, and doing it BIG.

    Patient empowerment relies on not settling into a collective anger that someday someone should do something. EACH of us needs to do something.

    It can be changing doctors because you’re unhappy with the old. But before you switch, let them know why you’re leaving (rude receptionist, wait time, etc.) And point out that you’ll be telling everyone you know NOT to use that practice.

    And empowered patients need to start at the top. If you have a hellish experience in the ER, don’t tell the doc on duty. Or the nurse. Or your friends. Tell the hospital administrator. That gets results.


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