After much contemplation, many rough responses from the hope-and-unicorns crowd, and watching yet another TED talk ( if you don’t know what TED Talks are – Google it!) given by ePatient Dave, I’ve decided that I want to shift my focus away from whining and ACTIVELY work change the face of health care as we know it today. I want to make a real difference.

I want to call doctors on their sarcastic attitudes about so-called “cyberchondriacs” and hold them responsible for dismissing patients as “horses” that think they are “zebras.” (We are are familiar with that quote.)

Let me fill you in on a brief example of 2 exchanges I had on an iPhone app called “HealthTap” that makes bold claims in their Mission Statement such as: “We’re dedicated to improving people’s health and well-being by providing our users personalized health information and free online and mobile answers from thousands of the best physicians in the U.S. Our goal is to help people better understand health, make more informed health decisions and find the very best doctors.”

(REALLY. Bullshit, not in my experience with any if their so-called experts.)

We’re also committed to our physicians. We want to help doctors better serve existing patients, find new ones and build their reputations by We’re also committed to our physicians. We want to help doctors better serve existing patients, find new ones and build their reputations by demonstrating their expertise online.

We believe that everyone has the right to free, reliable, and independent health information. We also believe that the most trustworthy health information comes from medical experts and that the best health decisions take into account unbiased expert knowledge, community insights and relevant data.

We’ve created HealthTap to reflect these beliefs, and to be available to you, anytime and anywhere.

Again – BULLSHIT,

I want to tell these so-called expert doctors that tell me things such as. “There’s an old saying in medicine that ‘common things happen commonly. The corollary to that wisdom is that ‘rare things happen rarely.’ Baroreceptor failure (a condition that has been postulated by my docs IRL that I MAY have.) is so rare, that you can forget about it. look for a different explanation .’
Wow. Really??? Telling a person to just forget about a diagnosis!!! bold move. Essentially telling a patient that they couldn’t possibly have anything rare (especially after providing this service with my entire recent health (or lack thereof) history. Not only ballsy, but incredibly disrespectful truly and downright inappropriate.
Same doc (lucky freaking me) – different query: I have bizarre BP readings. Very. I have a well-documented autonomic disorder, that primarily effects BP regulation and responses in the body. I write this service about a very strange reading I just got – just my luck – same snarky doc answers my question. This time, his words of cluelessness were insulting AND stupid: “it isn’t physiologically (possible) to have pulse pressures of 10-20.i doubt those pressures are accurate and that your cuff is mis-sizedor that your device is inaccurate, mist likely the former. A common cause of this is a large arm. Is your arm large?”
Keeping in mind that the docs that answer these queries have access to ALL of our health info, from age to weight (hint hint) and all of our most recent diagnosis, data and medications.
And this guy not only told me I don’t know how to take my BP, I don’t know how to accurately record my BP, but I’m also FAT,
This is just a tiny example of the poor quality, “allegedly” cutting edge medical help available me via an app on our awesome iPhones. I have had several responses from docs just as rude and horrible – I just cannot believe that people are using this app instead of going to valid, genuine medical websites (not WebMD or “support sites” sprouted like weeds on Facebook, for example) but sites like the Mayo, Medscape, NEJM, MedWhat, UpToDate, etc.
I want to have an effect on sites like this HealthTap – they make bold claims, then treat educated people in distress like dolts.
I have more stellar examples of rudeness and incompetence. But I won’t bore you,

I want to change things for patients. I want to make THEM the respected person in the doctor-patient relationship, I want patients to be keenly listened to as if they were the most important person in that doctors’ office.
Because they are.

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Comments
  1. epatientdave says:

    So, Lori, here’s a bit of reading for you to think about. http://www.foghound.com/rebel-rebel/

  2. epatientdave says:

    First, if you want to know what kind of a company HealthTap is, read this post… their founder had the stones chutzpah to tell Susannah Fox she was interpreting her own data wrong! I’d always been suspicious of them because of the founder’s involvement with another sleazy enterprise, which ripped off patient bloggers, leading to an uprising that overthrew their company.

    But this episode took the cake: to misuse the data of the most respected researcher in the field, to the point where she interrupted his speech(!!) – and then tell her SHE doesn’t know what she’s talking about?

    Anyway: It’s interesting that you got that out of my Maastricht talk; what you said here sounds more like my 2012 talk in Portugal. I was exhausted from jet lag so it didn’t come across well but the talk is here: http://www.youtube.com/watch?v=_bJtJP_2rYo One line is on my Facebook page header: “One could sit back and complain, but that’s not what empowered people do.”

    I’ll email you.

  3. epatientdave says:

    Well, AWESOME. Welcome to the club!

    Which TED talk did you see – O’Porto? The one about “empowered people go the extra mile”?

    p.s. Are you on Twitter? Can’t find ya.

    p.p.s. Yeah, you’re right – a doc who says “This is rare so you don’t have it” is making a pretty significant error. No wonder some don’t want the visits to be recorded for playback later, eh?

    • Lori says:

      Thank you!! What an HONOR to hear from you! It was TED Netherlands. You had encouraged people to “get their data” (which is what I have been doing for decades now)and one other thing at the end that I can’t remember since I currently have a head cold. (Arrrrrgh)
      I am on Twitter as AraSevera13.

      I would LOVE to know how I could work with you to spread the ePatient message. I’m soooo sickened by the swarms of improper info out there on the interwebs – I cringe just thinking about it.

      Are there certain orgs you with with?

      While I am fairly skilled in navigating the horrific medical community here in Boston, I am now running into the roadblocks allegedly blocking patient access to records by HIPAA – or that’s what I’m being told. Also, a certain VC group has recent invaded the area and bought up the smaller, level 2 and 3 hospitals – and they have completely blocked access to records between providers – unless if course the other provider is part of their group – by charging copying fees – the refuse to go to EHRs. I had to pay $55 to get a SUMMARY of my last 2 yrs if care sent to my new PCP – and it took them 3 mo to get that to her.
      I’ve got a great PCP now that actually contacts docs personally before referring me – BUT – not everyone s that lucky.
      No human should be tested like a “less than” in this century, esp here in the US.

      Any advice would be greatly appreciated. I want to be involved I going something for the greater good, even as I try to fight the system for my own dx.

      My reg email is Lori dot Schneider at gmail.

      Thanks so much for contacting me!

      PPS: I had recorded visits surreptitiously in the past. That was before I know this was a dual consent state. Damn. I had some great snarkiness from the docs a few times too…would have been great fodder. The priceless idiocy I get on that HealthTap App never ceases to amaze me. It would make a great comedy routine…

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