Hey lurkers – hi! Step right up, speak up here!

For a couple of years I’ve been wondering when controversy and snark would hit this movement. Looks like it showed up this morning.

Today one of our members posted on our members-only email group:

I was on a phone call recently with some colleagues in health IT and I was intrigued to learn that some people monitor this group to assess the S4PM “brand” and that they were watching us “wash our dirty laundry in public”.

See, though I called the email group members-only, its archive is open to the public. A year or two back, the members voted for that, so people could hear our conversations about this new approach to care, without having to join. (Only members can post to the list, but the archive is public.)

So now, look how some people (reportedly) respond to this openness: they use it to “assess our brand” (as if we were a marketing organization), and they gossip that opening the dialog to public viewing is somehow grandstanding.

(It’s not like we broadcast it; you have to know where the archive is and go look at it from time to time. I can’t see how that’s “washing dirty laundry in public,” but that’s what we were told.)

I replied – and I mean it, because I think this is symptomatic of sickness in healthcare:

Okay – this one pushed my button, in what I hope will be a useful way, once people get past the “reaction” level:

What kind of flipping IDIOT would interpret an open, transparent process as “washing your dirty laundry in public”?

A classic paternal “we don’t need to change healthcare” idiot, that’s who. People who think it’s better to not let others know your thoughts.

(And yes, I know they’re reading this.)

Hey you-all out there, pardon my French, but why don’t you have the **lls to identify yourselves and participate in the conversation?  What’s your objective in covertly monitoring what we’re saying?

I often say in my speeches, it takes a particular kind of perversion to keep patients in the dark about medical knowledge and then insult how little they know. I think it takes another kind of perversion to hide and watch and giggle or sneer about what people are discussing.

So, you who are observing, “assessing our brand,” and snarking about our open process: you know who we are, and who’s saying what; since you have opinions you’re sharing with others, would you care to speak up? Replying here on this blog won’t require joining (which only costs $30/year).

Again, I’m taking the unusual step (which I’m sure some won’t like) of outing this conversation because I know crunch-time is coming in healthcare, and it’s time for people to spend their energies on useful conversations, not burning calories gossipping about what others are doing as they try to create change.

Speak up, y’all. Be empowered. Leave a comment.



Posted in: news & gossip




13 Responses to “Hey lurkers – hi! Step right up, speak up here!”

  1. It is not our dirty laundry that is being aired!
    We are exposing the truth about patient harm in the healthcare industry — and defining truth as S4PM ‘dirty laundry’ is sick and wrong! Those who wish that we did not let truth blow in the fresh air of the internet are not going to get their wish. It is time to stop lurking and honestly join in the conversation, as ePatient Dave suggests!

  2. Dave,

    Don’t know about the “sarky” stuff you are talking about. I do know that I and others who have attempted to interact with S4PM have experienced a sense dogmatic elitism that is not conducive to engagement, participation,or even rare occasions of lurking.

    I guess I would describe it as a physician looking down over their glasses at a patient while grumbling that the patient just doesn’t get it if they aren’t in lock step with what the doctor is telling them.

    Just my 2 cents.

  3. Steve, THANK YOU, from the bottom of my heart. (I speak as one individual on the society’s board; I’m not representing official policy here.)

    I would deeply appreciate knowing how we (all) have come across that way. When it’s pointed out, I or others may say “Holy crap, I didn’t realize how that came across” or even “I didn’t realize what I was saying.”

    This is culture change, which includes all kinds of new self-awareness.

    I sense that this isn’t exactly what the subject gossip was about but by all means let’s discuss. If you feel it’s too off-topic, say so and we’ll decide what to do.

    Thanks again!

  4. Jeff Harris says:

    I too am overwhelmed with the arrogance of the industry. Here in NC I found a provider that improved my functional status by 50% with injection therapy coupled with suboxone. I learned yesterday that Blue Cross of NC has cut their contract. Now I will be paying out of pocket. Fortunately the provider is a wonderful man who is basically giving the therapy away to me at his true cost.

    Other happenings: Both UNC and Duke are now charging their patients a $35 fee for administrative services to pay for their new clinics. This adds to the copay and for many is unaffordable.

    Think of it this way, Medicaid patient with diabetes can only find affordable endocrinologist at UNC. Not only do they drive fifty miles at $3.75 per gallon but now have a $35 fee. This is crazy when you consider the fact that many earn minimum wage and can’t afford the ‘good foods’ we prescribe for them.

    It appears our Healthcare leadership is completely disconnected from reality and I am stepping in with you to fight the fight.

    • Jeff, I’m missing a connection – I didn’t say anything about arrogance or any particular industry, did I? (Perhaps I invited a tangent when I said it’s crunch-time and people will be fighting over money.)

      • Jeff Harris says:

        Yes Dave, you never used the word arrogance. This is my judgment of an industry that continues to invent technology, policy and payment strategies without adequate representation from patient-consumers.

        • For what it’s worth, I’ll repeat the lesson that I keep having to remind myself about, over and over: every system produces the result’s it’s structured to produce. The incentives in the industry today have an almost total disconnect between what consumers/patients/families want and what people get paid for. So although I myself have written some insulting words about the behaviors that result, and I might agree that sometimes arrogance does show up, it doesn’t seem to be the root cause.

          That’s starting to change now that the Patient Protection & Affordable Care Act rolls out (Obamacare).

          btw, re arrogant, I like this definition, from Wiktionary: “that species of pride which consists in exorbitant claims of rank, dignity, estimation, or power, or which exalts the worth or importance of the person to an undue degree;…”

  5. Mighty Casey says:

    I am always willing to own my opinions, in public, any where, any time.

    It worries me that, in a time of greatly needed change in a very paternalistic and $$-heavy industry (healthcare, in case you were wondering), it seems that the players are forming camps to protect their market share.

    Don’t make the mistake of thinking that’s not what’s happening, because it *is* happening.

    We’re not washing our laundry, we’re trying to figure out the best way(s) to get PATIENTS a seat at the table to help drive meaningful change in all the argy-bargy about “meaningful use”.

    We’re acting like we’re PART OF THE HEALTHCARE SYSTEM. Which seems to make the sacred cows veryvery nervous.

    Yo, cows: we’re not trying to eat you, we’re trying to figure out how to share the road with you. You’ve been lying in the middle of the doggone road for a long time. Get up, and start walking with us.

  6. I’m a member of S4PM. I read the email list to learn. I have urged many physicians to join S4PM and be silent on the list, but read it to learn about the view a mostly active and activist group take as regards their own health.

    Call it lurking if you like. It will certainly lead to people making judgments, but it will also lead to raising awareness among physicians and hospital leaders of our S4PM activities. Credit at least some of these lurkers with the good sense to be able to distinguish among posts offering good sense, emotional distress and screeds. Any/all may upset a reader–all will educate a reader with an open mind. It’s those folks I’m introducing to S4PM.

    • Hi Steve(n) – personally I think your approach is fine.

      The issue described in the post is not members reading the list (the usual definition of lurking, in my experience) but non-SPM-members NOT joining, anonymously reading the archives (which is fine – that’s why they’re public) *to size us up* and then snarking about it – kibitzing, if you will.

      I can’t imagine any productive explanation for doing that. (That’s different from your “to learn about the view…,” which by definition is a useful activity, IMO.

      I just don’t think we collectively have a lot of excess resource to squander on kibitzing – this industry needs constructive dialog.

  7. Dave et al
    This discussion makes me even prouder to be a (still new and still learning) member of this group. Thank you so much, all of you, for thoughtfully engaging the complicated issues at hand.

    This is the biggest issue we face as a nation, and it will take good will, boundless energy and a commitment to the common good to make change happen.

    Thank you for showing the way.

  8. Lurking, yes — watching the blog (I’d love to check out the list archive). What I’ve read over the last few months is encouraging and exciting, and I’m even more excited that the response to “snark” about transparency is *more* transparency.

    I look forward to switching from lurker to member once I find a job.

  9. […] of being disruptive, ePatient Dave stirred things up on the e-patient.net blog with his post titled “Hey Lurkers – – hi! Step right up, speak up here!” Dave […]

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