Significant Science

Before we begin, Dave, I would like to provide readers with a bit of background. I first heard of you (as did many others who follow healthcare issues, especially questions touching on healthcare IT and healthcare information management matters) when the Boston Globe reported in April 2009 on the shock you got when, after transferring your medical records from Beth Israel Deaconess Medical Center, you examined how those records were translated in the personal health record you were creating in Google Health. More on that brouhaha later in this interview. The key point for now is that that event thrust you into the forefront of the e-Patient, Health 2.0, consumer health and patient empowerment landscape. Indeed, so much so that you were asked by no less a personage than Gunther Eysenbach, who is generally credited with creating the Medicine 2.0 movement, to deliver the keynote at the recent Medicine 2.0 conference.

I was in the audience and like so many of the attendees was quite impressed, even electrified by your talk. That audience consisted primarily of medical people (e.g., clinical researchers, healthcare information managers, health policy analysts, nurse informaticians) and they were clearly moved and galvanized by your talk which was entitled, “Gimme My Damn Data!” Indeed, one attendee referred to you as a rock star of the e-Patient movement. Clearly, you are a mover and a shaker, a thought leader and all of those superlatives. Pretty heady stuff, for someone who just two years ago was a software guy family man just trying to survive kidney cancer.

I have since heard you speak at conferences such as Health 2.0,
the 2009 Connected Health Symposium and the e-Patient Connections Conference 2009 .

All of your talks have been superb and I very much urge professional organizations and societies in healthcare (e.g., medical librarianship, healthcare administration, informatics, health technology, consumer health) and in Web 2.0, and Internet matters and scientific communication to sign you up as a keynote speaker. Your talks are uniformly compelling and memorable.

Let’s start with your illness experience and how that led to your activism on the e-Patient/participatory medicine front.

First of all, let us start with the day before you received the shock of a diagnosis. What made you set up that fateful medical appointment?

Great question, because that appointment was a result of my having chosen years earlier to be actively engaged in my care. And it was a result of my having insurance so I could get a regular check-up.

Decades earlier I’d had a bad experience with a plastic surgeon on a small skin cancer. Something had felt wrong the moment I entered his office. The first thing I had to do was sign disclaimers not to sue his corporation, and he took offense when I asked if there would be a scar. He never came to visit me in the hospital – I had to check myself out – and a year later he took it on the lam to Florida. Ten years ago I had a somewhat similar experience with a dentist who seemed money-hungry. I left, and, amusingly, a year later he was deported for tax evasion. Both of these were relatively minor experiences that taught me to “wise up and stand up” as a healthcare consumer.

So, some years ago I decided it was a priority to find a doctor who thinks like me, and to get myself affiliated with a major teaching hospital so I’d be ready to roll if something bad happens. I did this because a close relative who works in an ICU told me that teaching hospitals are more likely to be up on the latest treatments. And in my case, that made all the difference.

You could say I was an e-Patient, empowered to think and engaged in my care, long before I’d heard the term.

The cancer was discovered in what they call an “incidental finding”: I had a sore shoulder, and when it was x-rayed, a big shadowy spot showed up, which turned out to be one of many kidney cancer tumors throughout my lungs. Without that x-ray, during my annual check-up when I had no real symptoms, I’d be dead today.

And that is the hard truth for people who can’t afford to get annual check-ups, like Regina Holliday’s deceased husband Fred. He even had classic symptoms – I didn’t – and waited it out, too long.

I also want to say that I barely got in soon enough: I requested that physical in September, and my doctor didn’t have a slot until December 30. My case might have been less dramatic if care had been available earlier.

What was your first experience with online support groups? Can you tell us about the Association of Cancer Online Resources, ACOR:

I note, for instance, that you and ACOR founder Gilles Frydman are founding members of the board of directors of the Society for Participatory Medicine. Please tell us about the aims of the society and your role in it.

A pivotal moment in my life was the day my primary physician and I met about the confirmed diagnosis. He handed me a slip of paper that said “ACOR.org” and told me a good friend of his had started it, and they have a good kidney cancer community.

Gilles and my primary physician, Danny Sands, are long-time members of the e-Patient Scholars Working Group, which was formed by Tom Ferguson MD, a true visionary. (Full roster) Tom was a long-time advocate of patient empowerment; he was medical editor of the Whole Earth Catalog, a Woodstock-era classic subtitled “Access to tools.” It was all about learning to be self-sufficient.

When the Web came along in the 1990s, “Doc Tom” foresaw that this was the ultimate access to tools, medically: access to information that only professionals could read. And as time went by he saw that the internet connected patients with each other, letting them (us) share information that in the past we could never connect. ACOR was (and still is) one potent example: activated patients on ACOR now gather – and publish – information more rapidly than the FDA.

Ferguson spotted people like Gilles and Danny doing what he had foreseen, using the internet to transform the practice of healthcare, and formed his working group. His white paper, documenting all this, was in process when he died unexpectedly in 2006; the group finished it in 2007.

In 2009 the group decided the time had come to get out of “think tank” mode and bring the concepts out into the world. The group incorporated as the Society for Participatory Medicine. As its website says, it was “founded to learn about and promote Participatory Medicine through writing, speaking, social networking, and other channels.” In its first year the principal activity has been to start up the Journal of Participatory Medicine, which will bring it from anecdote to evidence, from principles and concepts to viable science.

ACOR, based as it is on electronic mailing lists, is somewhat old-fashioned technologically vis-à-vis the rise of online patient communities such as PatientsLikeMe. As someone with a strong background in the world of software and tech in general and an empowered patient, could you delineate for us the differences from the standpoint of format, value of information you gleaned and the emotional support you received from each type of support community? To wit, what would you tell a Dave deBronkart of today who has just been diagnosed with kidney cancer to do on his computer (or, indeed, is a smart phone or some other device better for e-Patients?) as soon as he feels ready to start employing online resources to educate himself about his illness?

The best, most current information about a disease (and what to do about it) comes from a well established patient community. Find one for your disease, if you can.

I think one of the most urgent problems is the lack of well established patient communities. It takes time for the knowledge to accumulate.

One of my slogans is “It ain’t the platform, it’s the people.” ACOR is almost quaint, it’s so antique: a plain-text “listserv” email system. Part of me wishes they’d modernize, but Gilles and others are adamant about the reality that a lot of people around the world don’t have broadband. By keeping it technologically simple they keep costs down (ACOR is 100% free) and accessible.

Having said that, I think there’s a major problem with ACOR being just a listserv: you can’t go there and browse for past answers, so every single new visitor has to be answered over and over again. This makes it hard for new members to become contributing experts, and it means if key members (who are familiar with the standard answers) move along in life, something important is lost, because searching listserv archives is nowhere near as easy as browsing a typical Web forum.

I’m certain that answers will evolve. That’s part of what the Society and Journal hope to advance and support. In the meantime, it breaks my heart every time someone says “Dave, a relative just got a bad diagnosis – where do we start?” and I have to say that no such community exists for that disease. We must fix this.

One of the things you mentioned in your talk is that so much of the information a newly diagnosed patient often comes across on the Internet is not only depressing and disheartening but often unnecessarily, inaccurately so. Could you give us some examples of the kinds of things you read that alarmed and demoralized you, how you later found out how wrong some of the grimmest scenarios were and what you have done since in terms of your blogging and tweeting to educate the medical community and the general public about such matters?

The important thing isn’t whether the news is depressing, it’s whether it’s accurate. I needed to know how bad my situation was. I needed to know what I was getting myself into with the side effects for my treatment; my situation was “Kid, you’re dying. Here’s your lifeline. It’s likely to be rough, so here’s what to expect.”

The grimmest scenarios that I read were actually quite accurate. But I wanted more: okay, you who’ve been through the treatment, what’s it really like? What should I expect? I couldn’t find that anywhere.

On the other hand, because of the “lethal lag time” caused by publication delays, all of the information I found on so-called authoritative websites was out of date. I read that my treatment only worked in 7% or 13% of cases; at my hospital it’s 20% (now 25%).

All I’m doing to educate people is blogging, informed by my own personal strengths and knowledge. I have no medical training but like everyone I have skills from my career and my life. I like to write, I like to analyze complex technical issues and explain them in simple terms, I like to empower people, I believe in the power of our minds and attitudes, and I have twenty years’ experience with online communities (going back to CompuServe), so sharing my observations comes naturally.

In your talk, “Gimme My Damn Data!” you memorably recounted an episode involving a speaker at a medical conference who was painting a bleak picture of survival rates among a certain patient population and your polite but persistent questions to that speaker that made him concede that his data was roughly a decade behind what was actually occurring. Please tell us about that incident and what it suggests about the disconnect between the lived experience of patients and the doctors and other healthcare providers who are treating them and the sometimes somewhat insulated world of clinical research.

I don’t think I “made him concede” anything – I think he was simply conforming to the standard of the medical profession, which is not to assert anything that doesn’t have data to back it up. This is a good thing; “evidence-based medicine” has led to dramatic reductions in unnecessary care, for instance hysterectomies.

But it was a patient day, to educate patients, and what patients need is useful information. In this case, the good doctor reported the standard – the most recent peer-reviewed study – which, unfortunately, had been completed before any of today’s treatments were developed. So the numbers he presented were actually of no use to people diagnosed today!

This is an inherent limitation in the scientific community’s approach to a medical crisis, especially in a rapidly changing field. It takes years for studies to be completed, and by the nature of the scientific method, a study must be done in a stable environment. And then it takes more years for the results to be published. People can die during that “lethal lag time.”

As I say, in a crisis your best source of useful information is from a smart community of people who are familiar with recent instances of that same crisis. Ironically, by the nature of the scientific process, usually that information does not come from scientists, because they don’t yet have scientific certainty. Patients have enough practical experience to know what to recommend to each other.

Look, here’s what it comes down to: in less than a day my ACOR community had told me to try to get high-dosage Interleukin if I could, because it’s the only thing that approaches a cure. As vital as that fact is, try to find that advice on any establishment website. Wouldn’t you want to know that?

Getting back to the imbroglio involving your personal health data, Beth Israel Deaconess Medical Center, Google Health and your need to almost literally decode the data that eventually appeared in your Google Health personal health record can you tell us why you wanted to create a Google Health PHR in the first place? Did you have qualms over the security and privacy of such an account? Possibly not, given that minute details of it eventually appeared in a national media firestorm!

I don’t fault anyone for concerns about privacy. What could be more important than the right to determine what others know about your most vital personal details? And what could be more important medically than knowing it’s safe to tell your care providers absolutely everything? To me it’s a fundamental part of the right to good care, the right to survive.

But as I said when I announced my decision, I concluded three things: (1) our data is already not as secure as we think (like it or not); (2) great things can come from aggregating our data and applying smart analysis tools to it; (3) my experience in the high-tech industry has taught me that “mash-ups” (combining software tools and applying them to data) can create rapid innovation.

And boy do we need innovation. Ask yourself, why do cell phones and iPods evolve so rapidly, and health tools don’t? One key reason is that health data is locked up tight, so clever innovators can’t develop tools that make use of it.

I fully support anyone who wants to keep their health data private. And, me being me, I want to jump in and explore.

Who were the main players in that matter? Interestingly, you happened to be a patient at the very institution where one of the most influential people on the healthcare IT front, John Halamka, serves as chief information officer. Did you have any personal dealings with him? If so, what were they like?

John and my physician Danny Sands were co-creators of PatientSite, my hospital’s patient portal. As I said in my post about it, “I think what he wrote about the Google Health interface was overzealous, but I believe he’s a good man, committed to helping us own our own data.”

Were there any bad guys in the Google Health episode?

Certainly nobody with cynical intent, and I can’t imagine calling someone a “bad guy” without that.

Would you advise laypeople to set up such accounts?

If they want to, sure. I think it’s a good thing to be engaged in your health, but not everyone wants to.

In some ways, do you think the Google Health episode may have made hospitals and other healthcare entities more not less hostile to the e-Patient movement? After all, the very public parsing of their billing practices in your own case was a public image nightmare for them. And it didn’t do Google Health much good, either. Do you find, after all the initial headaches, that your Google Health PHR has been a boon for you? Please provide specific examples of how it has rendered life easier for you as a patient and perhaps for your healthcare providers.

Sorry, I have absolutely nothing to offer here. I have no information from anyone about hospital nightmares, and I haven’t seen any indication that the apparent billing fraud or errors have actually caused any embarrassment to anyone.

Could you discuss in particular what, specifically, had gone haywire in the transfer of your data from Beth Israel Deaconess Medical Center to Google Health and what advice you would have for patients, physicians and medical records departments in such matters?

Simply put, it seems apparent that the data transfer wasn’t designed thoughtfully using ordinary IT practices, and was clearly never tested with any real-world data. It was just a gross overstatement for the hospital to say that the interface was finished.

My advice? Think; test; and don’t believe things you read in press releases until you’ve talked to users who’ve used it.

One of the reasons, I think, that your talk was so well received at Medicine 2.0 is that you are not confrontational. You seem to genuinely like medical people and spoke of them with admiration and affection. Could you discuss who have been your allies in the e-Patient movement? You seem to have a special rapport with physicians of a technological bent, for instance, Gunther Eysenbach and Danny Sands. Can you tell us what led Gunther Eysenbach to ask you to speak at Medicine 2.0?

Heck yes I like good doctors: without them we wouldn’t be talking and you never would have heard my name. And good doctors support me in being well.

It’s natural that I talk with doctors – and laypeople – who share my interests … like you. And no, I can’t speak for Gunther.

Life has been a whirlwind for your these past two years. One day you are fighting for your life and the next day you are making a splash on the lecture circuit. One thing I find particularly interesting is your crossover appeal to many professional groups in healthcare. For instance, as I listened to your talk at Medicine 2.0 I kept wishing that you would be a featured speaker at gatherings of the Medical Library Association. I would think medical social workers would have found it enlightening as well. And you are carrying your message of harnessing technology in the interest of a mutually beneficial efficiency to industry-dominated forums as well. For instance, as I mentioned you were one of the featured speakers at the e-Patient Connections Conference 2009 and the attendees of that conference were a different type from the academic medicine/clinical research/public health types of Medicine 2.0. The Web site of the e-Patient Connections Conference 2009 suggests as likely attendees: life science brand managers, ePharma marketers, PR professionals, hospital marketers, Health 2.0 innovators, patient education specialists and anybody who is interested in the best ways to reach, engage and educate today’s empowered patients. Sounds like just the kind of groups who could benefit from hearing what you have to say. Please tell us what takeaways you would give each of those groups as they deal with the age of the e-Patient?

E-Patient Connections is a business conference, about connecting with engaged patients. I’m in marketing myself – I know what it is to want to reach people with information that I think has value. The great challenge the pharma industry faces is the vast array of cases where they’ve been found, very publicly, to be disingenuous or worse. To survive in the era of social media they need to have a rigid policy, rigidly enforced from the top down, to straighten up and be real. There are a lot of good people in the life sciences – they need to be the ones running the show.

Nobody knows better than I do that there’s plenty of genuine value in what the life science industries create. There’s no need to be anything other than straight-up about it.

Please give us your impressions of the Medicine 2.0 conference. What talks did you find most impressive? What do you see as the differences between Health 2.0 and Medicine 2.0?

I can only offer a naïve, young impression – I’ve only been to one of each conference, so I’m not yet a savvy industry observer.

Having said that, Medicine 2.0 was a treat for me because of where I’m at personally in my growing awareness of participatory health. I only read the e-Patient white paper in January 2008, and it’s kind of taken over my life. In comparison, Health 2.0 strikes me as a glitzier “what’s hot” conference, with lots of hip edgy commentary on the leading edge. Medicine 2.0 seemed to have more information on who’s doing what in reality, and seemed to be far more patient-centered, care-centered, vs Health 2.0’s business focus. I have unlimited hunger for both.

Let’s talk about Twitter. One of the most fascinating features of Medicine 2.0 was that there was an enormous screen showing the tweets being generated by attendees even as each speech was in progress. You are a dynamo on that front.

How long have you been on Twitter? Did you get into it primarily in search of healthcare information during the worst stages of your illness or has it been primarily in your role as e-Patient advocate that you have gotten into it? What are your favorite Twitter tools and favorite twits “tweeple” and do you see Twitter as the ideal tool for the e-Patient movement?

Twitter didn’t really exist when I was sick. I signed up a year ago but only became really active last winter. I’m not a knee-jerk “early adopter” of everything new; the persuasive argument came from Jon Lebkowsky, an almost legendary guru in social media. He works at Social Web Strategies in Austin TX, with roots so deep that he was associated with the Whole Earth Catalog people, and who now helps run the amazing South By Southwest conference every March in Austin. Jon knows what makes various tools work, and he told me that while a lot of people use Twitter for what’s considered “pointless babble,” it’s great for making new connections and discovering conversations you otherwise would have missed. Truer words were never spoken.

My Twitter tools are TweetDeck (its multi-column display lets me manage the flood) and, on the Blackberry, UberTwitter. For harvesting post-event hashtag conversations, I use WTHashtag.

You are a great source of intelligence on a huge variety of topics related to Health 2.0 and Medicine 2.0—and on open access publishing too. For example, I just read your tweet about the launch of the Journal of Participatory Medicine and read on the journal’s site this fascinating info:

“The Journal of Participatory Medicine, slated to launch in fall 2009, will explore the extent to which shared decision-making in health care, and deep patient engagement, affect outcomes. Our mission is to transform the culture of medicine to be more participatory. We believe that doing so, as the saying goes, will take a village – perhaps even a large metropolitan area! JPM constitutes a major investment of time and talent in community development…

JPM will be a peer reviewed journal published exclusively in an online journal format, using Open Journal Systems, an open source journal management and publishing system developed by the Public Knowledge Project — a nonprofit partnership between The University of British Columbia University, Simon Fraser University and Stanford University. The open access model will be applied (no fee to access articles), in the spirit of the participatory content.”

Thus, not only are you helping to transform medicine as a sideline you are reshaping the world of scholarly publishing. Do you ever sleep?

Sure I sleep – it’s a misconception if anyone thinks I’ve done any of the work in creating the journal! That’s been done by Managing Editor Sarah Greene and, once again, Gilles Frydman, who not only did the work of building the journal’s web platform (Open Journal System), but wrote one of the articles. He’s the one who never sleeps.

Is there a female version of e-Patient Dave?

There are powerful, smart women in many aspects of the patient engagement movement. (I’d hesitate to start listing them because I don’t want to leave anyone out…. We could start crawling through my Twitter followers if you really want.) This movement existed long before I came along, and, more to the point, smart patients of all genders were doing this long before the term “e-Patient.”

One thing that thrills me is the recent discovery of how much the Participatory Medicine movement has in common with the birthing and maternity movement, exemplified by the community at Lamaze International and Our Bodies, Ourselves. That book appeared on the scene as I was graduating college, and was truly revolutionary in that it taught women they could understand and even (gasp) look at their reproductive parts, and take command of their reproductive selves and their sex lives. Never before have so many people’s lives been altered by such a fundamental liberating shift.

My other favorite precedent for the e-Patient movement was Dr. Benjamin Spock’s Baby Book, which said all the way back in 1946 that laypeople have plenty of knowledge: its opening words are “Trust yourself: you know more than you think you do.”

What are your goals for the next year? The next five?

A year from now I want the Society to have robust funding and a robust leadership team, building membership and web tools that enable citizen participation. I want the Journal to be widely recognized as credible and valuable.

Here’s a call to action: achieving that will take some doing, because right now we have almost no funding and only a handful of people with enough time in their schedule to build that future. So I’m calling for people who do know how to build teams and get funding from foundations. Tom’s white paper, which we now see as so important, was funded in part by Robert Wood Johnson Foundation.

Finally, who are your heroes in medicine, technology and in other respect?

I don’t think in terms of heroes. People I admire are those who have a vision for a better world and have been able to express it in a way that inspires others. I recently ran across a quote by Saint-Exupery: “If you want to build a ship, don’t drum up people to collect wood and assign them tasks; teach them to long for the endless immensity of the sea.”

In participatory medicine I honor the visionaries who created the things “Doc Tom” wrote about in his white paper: the members of the Working Group, Dr. Eysenbach, and many more. There’s a special place in my heart for Gilles (for founding ACOR for me!) and of course my primary, Danny Sands.

At a personal level I honor everyone involved in the renal tumor program at Beth Israel Deaconess, especially my surgeon Dr. Andrew Wagner and my oncologist Dr. David McDermott, and the magnificent nurse practitioners who managed (and still manage) my case: Kendra Bradley, Gretchen Chambers, MeeYoung Lee, Virginia Seery. And the nurses who gave me wonderful care while in hospital, when my life was at stake. And Dr. Megan Anderson, the bone surgeon who masterfully reassembled my leg with cement and steel after the cancer made it break.

In social change, I admire Dr. King and Mahatma Gandhi. In personal development, a large part of who I am today is a result of the work of Werner Erhard, founder of “est,” whose successor organization Landmark Education gave me most of my personal growth training. Every May I attend Landmark’s Conference for Global Transformation, whose participants are at work on altering the world’s conversations about what’s possible, and creating results to prove it in reality.

It’s Landmark that taught me about what existentialists call “authenticity” – getting your past off of your windshield so you can see today more clearly, and be who you really are. When you achieve that, your full human potential can have its effect in the world, and your communication gains new power. Without a doubt that had a pivotal effect on how I faced my cancer, and how I now face the work of waking people up to what’s possible with participatory medicine.

Thank you for your time, e-Patient Dave.

Thank YOU!