Dave deBronkart (ePatientDave), The Original ePatient Advocate

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This “#TalkHITwithCTG” series is brought to you by our partner CTG Health Solutions (CTGHS) and the episodes were broadcast live in CTGHS’s booth at the The HIMSS15 Annual Conference and Exhibition.  The interviews were recorded and will be published on a regular basis on intrepidNow Healthcare. Bookmark this page to follow along with Patient Advocates, CIOs, CEOs and other thought leaders from health systems across the country.  Also, read more about why CTGHS is the trusted advisor to over 600 health systems and providers.

Dave deBronkart – The Original Patient Advocate

Dave joined us to discuss how the Patient Advocacy movement started, how he was destined to become ePatientDave, current challenges and much more!

We discuss the following with Dave on this episode:

Follow ePatientDave on Twitter, LinkedIn and Facebook!

Guest Bio ePatient Dave on Wikipedia

Get Dave’s Book Let Patients Help! A Patient Engagement Handbook “Will unquestionably help many individuals become more active andfully engaged in their health care.” – from the introduction by Eric Topol

Patient Advocates

CTGHS was inspired to create a special “series” of interviews on Patient Advocacy including ePatient Dave, Regina Holliday and the HISTalk Patient Advocate Scholarship winners (funded by CTGHS).  We learned so much from them, were inspired by them, and look forward to supporting each of them in their advocacy going forward.

• Dave deBronkart – @ePatientDave – The Original Patient Advocate
• Regina Holliday – @ReginaHolliday – Founding Artist, #TheWalkingGallery
• Amanda Greene – @LALupusLady – @HISTalk Patient Advocate Scholarship Winner
• Carly Medosch – @CarlyRM – @HISTalk Patient Advocate Scholarship Winner
• Melanie Peron – @leffet_papillon – @HISTalk Patient Advocate Scholarship Winner
• Tami Rich – @BostonHeartMom – @HISTalk Patient Advocate Scholarship Winner

TRANSCRIPT

You’re listening to Intrepid Healthcare’s exclusive coverage of the HIMSS Annual Conference and Exhibition. Welcome to HIMSS 15 direct from Chicago. Our coverage is brought to you by CTG Health Solutions. Your trusted advisor for healthcare IT advisory, and consulting services. And now, here are your hosts, Joe Lavelle and Rayanne Thorne.

Joe:            Welcome to this special episode of Intrepid Healthcare. Live from the HIMSS 15 Exhibition floor in Chicago. I’m your host Joe Lavelle and I’m excited to bring you Talk HIT with CTG with my friend and co-host, Rayanne Thorne. From our remote studio right here in the CTG Health Solutions booth. Our fantastic sponsor, CTG Health Solutions, has provided healthcare IT operational and strategic consulting support to more than 600 healthcare organizations. And what a great partner they are.

We could not be more excited to introduce our first guest, Dave deBronkart, whom many of you will know as ePatient Dave. Dave is a cancer patient and a blogger who in 2009 became a noted activist for healthcare transformation to participatory medicine and personal health data rights. He’s as close as you come to a rock star in health IT, and it’s an absolute privilege to have him on our show.

A quick note from the editor, we interviewed Dave in the HIMSS 15 exhibit hall before the show opened on the first day, and unfortunately, the recording of Dave’s introduction and most of him providing his background was unusable due to the noise in the hall at the time. We join the conversation here at the end of Dave’s introduction as he describes a situation of his care.

Dave:                  That solved a problem I’d had in the hospital. It goes to Walgreens or whatever and gets your prescriptions and plans what you have to take when. Right, which is a user friendly thing that’s common in most fields. But it’s funny because with the first time I was discharged during my treatment, a nurse practitioner gave me a schedule grid that she had drawn with a pencil and a ruler. And I said, “Why didn’t the computer do this?” And she said, “Computers can’t do this.”

So I went back and I said, “Ah, open data hut and release the data and let innovators do it.” And so what happened, I pumped the button, my hospital was the first one to offer a link to move you data into Google. And I blogged, “I don’t trust Goggle any more than I did, but I’m really interested in seeding innovations, seeding innovation.” What came across was garbage. Conditions I’d never had, the acne, stuff I had, no dates attached to anything. Aortic aneurysm, and it turns out…

Rayanne:   What?

Dave:                  Well every single person, including YouTube, should check you chart because most of them contain mistakes. And this is not just a patient safety issue, no physician can possible do what they were trained to if they’re given wrong facts.

Joe:            That’s right.

Rayanne:   That’s right.

Dave:                  I mean, my mother, when she was discharged after hip replacement a few years ago, was transferred to rehab, and somehow her thyroid condition came across wrong. She’s “hyper” and it came across as “hypo.” The best doctor in the world could have killed her. But my two…there’s this wonderful, dynamic, I call the “Alpha Sister” in many families. It’s the middle-aged woman who steps in and says, “All right, I’m in charge here, is everything okay?” And my two sisters said, “Can we see the chart?” And the rehab place said, “Sure.” And they found the mistake before any harm was done.

So the people are mysterious about what is his patient engagement. Well there you have it. Patient and family engagement, improving the quality of data, improving outcomes and avoiding harm at no cost to the system.

Rayanne:   How could an average patient under take this? What do you need to do?

Dave:                  Well what’s not average? Ask for your data.

Rayanne:   So you just ask the hospital for your data, ask your physician?

Dave:                  So HIPAA is, of course, the law. And then enormous piles of regulations that initially was intended, IP in HIPAA is “insurance portability.” In order to move you insurance around, they’ve got to move you medical records around. And for that, then, all kinds of rules about being careful about it were written. And the rules are really complicated, and the penalties for screw up are huge. So many, many doctors and hospitals are just paralyzed and they say, “No you can’t have your own data.” And others say, “Yes you can have it, but it will cost you a gazillion dollars.”

And they’re also allowed because the rules were written almost 20 years ago. They’re allowed to take three weeks or longer to get it to you. Which when you’re in a crisis. So the thing is get your data now, you are entitled. It actually is a, HIPAA is administered by the Office for Civil Rights. It is a federal civil rights violation for somebody to not give you your data.

Rayanne:   That’s incredible.

Dave:                  And they have to fix mistakes. But it can take forever to do that. I mean, I found one chest x-ray identified me as a woman. And it took six weeks to get that fix.

Rayanne:   Before we move on, I want to make sure everybody knows how they can follow Dave. You can follow Dave on Twitter @ePatientDave, very simple. He is very active on social media. You also have a Ted Talk that folks can watch about the efforts that you have proceeded on and moved forward with. And I’ll turn the time back over to Joe, but thanks Dave for joining us today.

Joe:            Awesome. We’ve spent a lot of time the last eight years screwing NEHRs. Has that made it any better? Maybe with meaningful use too?

Dave:                  You know, it’s funny, because remember I said, type-setting machines? It turns out that I worked, starting in the 1970s, in computerizing the newspaper industry. And man, so there was a high volume, high time pressure work flow. Reporters typing on typewriters, copy boys, they were all boys, would grab the paper and run it to the editor, and then to the type-setting department. And they started computerizing that.

And for a long time, the workflow stunk. It was difficult. And more than once, I was brought in to a publisher’s officer, because I worked in sales and marketing in this IT related field. And I was sat down, and like I remembered to Concord Monitor in Concord, New Hampshire. The publisher said, “Dave, we’ve been publishing since the 1700s, we have only been late once.” So this is a usability story. “And that was November 22, 1963 when the president was shot a half an hour before press time. It is not okay for these systems to make it hard for us to get the job done. Fix it.”

I mean, I see signs all over the place here at HIMSS, “Usability, usability, we’re usable.” Well you talk to the people who use the systems and they say, “Not so much.”

Rayanne:   They’re going to tend to not agree. Now Dave when you joined us this morning, you seemed a little agitated. And I want to tap into that. I want you to talk about what has you frustrated today. What’s going on today that you want to tell us about?

Dave:                  So here I am shifting in my seat.

Rayanne:   Here we go, here we go. We love this.

Dave:                  Putting on my game face and all that. Well no, seriously, people have tried to years, I mean, there’s a great woman from the Pacific Northwest named Sherri Reynolds who has been with group health, and has done lots of work, and for a while she worked at ONC. And she discovered that…so after years of work to put together the regulations that say the providers have to let us see our record, and make it practical. View, download, and translate. And I’ll tell you, this is all, it’s for the patient’s benefit, but it’s also for the physicians benefit. No physician can possibly perform to the top of their training if they can’t see the information from other doctors.

Rayanne:   That makes sense right.

Dave:                  Of course. Well two regulations, which have said that provider gets full credit if only 5% of their patient population has tried to view, or download, or transmit their information. 95% can ignore it and they get full credit. Turns out that too high, we don’t know how to do that. “How can we control what patients do?”

Well you know, hospitals that say that, they really ought to think about, not the hospital’s providers, they really ought to think about, so they have problems with what they call patient compliance on everything else? Do they think that all they need to do to be an effective provider or care to a sick family is tell them what they’re supposed to do, and walk away?

Anyways, so CMS published at 4:45pm on Friday, buried in a pile of other changes, “Let’s change that 5%. You only have to get one patient to do it and you’ll get full credit.” Not 1%, one patient. So as somebody said yesterday in the patient engagement symposium, I was talking about this, and a hospital executive said, “Well, so all I have to do it get their chief nursing officer to look at her chart on the screen and they can say we’re good, we’re out of here.”

And the problem is, regardless of what people say, I mean, Sherri posted in a comment on ePatients.net, because you can believe we blogged about this overnight. Let me get back to the main point, Farzad Mostashari, who was the National Coordinator for several years, worked hard to put together these regulations. And he gave the closing talk yesterday at the patient engagement symposium. I wish it had been videotaped. But he spent the whole day somber, thinking about this. Because it’s important.

And when he gave his talk, he didn’t have slides, he wasn’t scripted. He told about his mother, you know, who’s in her older years. And how every time they see a new doctor, it’s really hard for that doctor to have a complete picture. You know, so this crap is interfering with his ability as an MV to help his mother.

Rayanne:   His own mother?

Dave:                  His own mother. And so what he said was, “We need a national day of action.” He wants to have a million patients call or e-mail their providers on the same day and Regina Holliday, the famous activist whose husband suffered, nobody knows if he’d had full access, and the best possible care, if he would have survived. But he suffered, clearly suffered unnecessarily because information about what he needed was not in the chart. Or was in the chart and no doctors looked at it. She said, this is the modern civil rights movement. So people should look for actions like you saw in the Civil Rights Movement in the 60s. Because this is not acceptable.

Rayanne:   And it effects everybody. It isn’t just effecting those that are speaking out. It’s effecting everybody. We really need to start paying attention.

Dave:                  Exactly the same as people who weren’t active in the Civil Rights Movement were affected by it.

Joe:            Dave we all have a story.

Rayanne:   I love your story.

Joe:            I’ve got two stories from last fall, my story, my mother’s story. We’re in this business, and it’s happening to us. I flew down with my mother got sick, tried to be the coordinator care…

Rayanne:   Right, right, her advocate.

Joe:            Yeah, she gets sent from the emergency room, into inpatient. The physician talks about her brain surgery, the ER physician, in his notes. She didn’t have brain surgery, she passed out. Now my mother is older, and she’s very sick, and she has cancer, and she has now hair. And so there’s lots of things wrong with her, but brain surgery wasn’t it. So some doctor downstream has not got to figure out, and go through these notes.

Rayanne:   What happened? What did she go through?

Joe:            And thank God that I had signed all the paperwork, so as soon as records were available, once a day I would go and get the records. And I’d go through them all, and when the doctor would come in I’d talk to them each day. But even then, you know, who can afford to have that kind of advocate, and how many of us are even qualified to do that?

Rayanne:   How many of us have that kind of advocate?

Dave:                  And I want to make it clear that this is a culture change issue. Last year I gave, I’m a professional keynote speaker now, this is what I do. I have a book called Let Patients Help which is just a very short summary of the talking points from my speeches. One of them, and being a marketing guy, I like cheesy slogans right. So one of them is “People perform better when they’re informed better.”

Joe:            I love it.

Rayanne:   I like that, that’s perfect.

Dave:                  Nobody can possibly perform to the top of their ability if they don’t have the facts, as I said. Another one is “Patient is not a third person word.” Your time will come, you’ve already experience that Joe.

Joe:            Yes.

Dave:                  And I spoke last year at NBME, “National Board of Medical Examiners.” They’re the ones who write the exam that medical students have to take before they can call themselves MD. And I learned something about the culture of medical education. Somebody came up to me at the end of that and said, “This has to be heard by the Dean of every medical school in America.”

And that fall, I did a breakout session at AAMC which is the “Association of American Medical Colleges.” And there is tremendous competition for what gets in to the curriculum, and I don’t in any way fault MDs for not knowing about IT issues that they were never trained for.

Rayanne:   Exactly.

Dave:                  So this is, again, my book isn’t entitled Patients Know Best, or Who Needs Doctors, it’s Let Patients Help. And I know there are numerous physicians who are on board. We have this society for participatory medicine, we have physicians, the co-chairs are my doctor and me. So this is not an anti-doctors movement. It’s let patients help.

Joe:            Dave, the ePatient Movement, it’s happening on our show.

Rayanne:   Absolutely.

Joe:            We have Regina tomorrow and the five advocates that won the HIS Talk Scholarship are going to be on our show.

Dave:                  Wonderful.

Joe:          This is something that we want to be a part of too. Tell us some other things going on this week that we want to call people’s attention to here at HIMSS.

Dave:                  I’m leaving tonight, so I’ve not been tuned in.

Rayanne:   Well we’re lucky to have you here.

Dave:                  Here’s something you can, people who are not familiar with this, and Regina will feel you in on this, it’s funny I want to define empowered. I’m a child of the 60s, I turned 65 in February. I was in Boston during the anti-war years, and feminism was coming through. And I came from a small town in Minnesota, outside St. Paul. And I got my head packed full of all kinds of radical rhetoric. And it somewhat bent my thinking, but obviously I didn’t become an anti-establishment, career hippy. I certainly know people who did. But I was a marketing executive, you know.

But I got very clear, an empowered person is somebody who does not say, “There’s nothing I can do.” Because that is the expression of being powerless. There’s nothing I can do.

Rayanne:   Do you think people can learn that?

Dave:                  Oh absolutely, I’ve seen it happen, sure. In the 60s we called consciousness raising, just raising your awareness. Same thing happened in the Women’s Movement. And every generation starts to go through it, like it’s funny, because I’m looking for the ePatient equivalent of the movie Nine to Five. Because in that movie Jane Fonda and Lilly Tomlin, and Dolly Parton, I mean, have we covered everybody? Gave us entertaining story of, oh this is what it’s like when you talk to your girlfriends and say, “Did he say that to you?” Then you think, “Well no, I’m not going to take that.”

Rayanne:   We’re raising awareness.

Dave:                  Exactly.

Rayanne:   On what’s happening. And it has been such a great pleasure to have you join us today.

Dave:                  One last thing.

Rayanne:   Please.

Dave:                  You could say that a woman who lived in a poor part of Washington DC, what could she do? She lives in western Maryland now. What could she do to change healthcare? Well she’s a painter, and she painted a 60ft mural about her husband’s death on the side of a gas station in Washington DC. The British Medical Journey took a picture of it and put it on the Table of Contents page. Then somebody said to her, “Would you paint my medical story on my jacket?” And that has grown to there are more than 300 of those jackets now. She’ll paint the story on your jacket for free, if you just agree to wear it to conferences to spread the conversation.

Rayanne:   Such a great story. This advocacy that’s taking place. This raising of awareness, raising consciousness, becoming empowered at patients, as professionals that work in this industry. And still, still so much to achieve.

Joe:            Dave as we start to wrap up, where can people go to contact you, learn more about you and the things you are doing?

Dave:                  Well as a marketing guy I believe in having a consistent brand.

Joe:            Yes sir.

Rayanne:   You are very good at that.

Dave:                  Twitter, Facebook, everything, ePatientDave. And the website is ePatientDave.com. It has videos, it has speeches, and media articles.

Joe:            It was inspiring and a pleasure. Thank you so much Dave, we really appreciate it.

Dave:                  Let patients help.

Rayanne:   Thanks Dave. We are coming to you live from the HIMSS 15 Conference in the South Expo Hall at Booth 1580. Please stop by, #TalkHIT with CTG.

Joe:            All right, and our live broadcast will return from Chicago right after this.

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This episode brought to you by CTG Health Solutions, your trusted #HealthIT Consulting and Services Provider!

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Joe Lavelle

Editor-in-Chief, Healthcare at intrepidNow

JOE LAVELLE is a Healthcare Management and Technology Consultant with a record of successfully meeting the business and technology challenges of diverse organizations including health plans, health delivery networks, and health care companies for 25 years. Joe worked his way up through Cap Gemini and Andersen Consulting to the partner/VP level of at First Consulting Group, Technology Solutions Group and Santa Rosa Consulting. After running his own company, Results First Consulting, for 12 years Joe Co-Founded intrepidNow with Todd Schnick to create incredible content to dramatically improve the sales and marketing efforts of their clients.

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