e-Patient Dave

Power to the Patient!

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e-Patient appeal: Paraneoplastic cerebellar degeneration, Boston area

A relative writes: “Anyone out there know anything about treatments, specialists, community for someone recently diagnosed with paraneoplastic cerebellar degeneration, especially in the Boston/New England region of the US?”

The condition’s Wikipedia page says: “It is believed to be due to an autoimmune reaction targeted against components of the central nervous system (specifically Purkinje cells and large brain stem nuclei). It is thought to be caused by an anti-neuronal antibody…”

I didn’t readily find much on my Patient Communities page, but I hope it will grow. I did find these search results on MedHelp.

> Boot Camp! <

Lecturing at FutureMed, at Ray Kurzweil's Singularity University, NASA Ames Research Center, Mountain View

Patient engagement is reshaping healthcare. Learn how. Learn why. Learn what to do.

First American edition: January 27, New York. Agenda and logistics below. Registration is now open on EventBrite.

e-Patients are equipped, enabled, empowered, and engaged in their care. They form empowered care partnerships with enlightened clinicians, sharing the load as well as the steering wheel. And they connect with each other, sharing knowledge and experiences in ways that were never before possible.

This is changing healthcare – reshaping what’s possible.

Learn how, learn why, and learn what to do, in this in-depth training from e-Patient Dave, the best-known spokesman of patient engagement. Save the date – registration should open the week of December 19.

Preliminary Agenda:

N.B.: Actual details are in development. An expert panel is expected, and hands-on web exercises; the following is a draft.

The e-Patient Boot Camp is the first-ever compilation of my keynotes and panel presentations from the past two years, speaking to dozens of audiences in many sectors: hospitals, care plans, small group practices, governments, government contractors, Federal policy meetings, health IT – everything from the Quantified Self to the Israel Internet Society, from healthcare improvement to the Duke Institute on Care at the End of Life.  Get thousands of dollars of conference content in a single day, plus hands-on:

  • Session 1: History of Patient Engagement, and a Case Study
    • Medical and cultural precursors; pioneers of e-patient behavior
    • Case study: my near-fatal cancer, and how the internet supplemented the excellent medical and surgical care I received
    • Pay it forward: my first blog
  • Session 2: “e-Patients: Empowered, Engaged, Equipped, Enabled”
    • Discovering the e-patient movement and “the e-Patient White Paper”
    • How can it be that patients – without medical degrees – can genuinely bring value to the table??
    • Health on the internet: harnessing the value, preventing the risks
    • Doctors online – shifting the balance of online quality
  • Session 3: “Give Us Our Data” – reshaping care through health IT
    • The validity and usefulness of patient access to medical records
    • Patient engagement becomes Federal policy: the US government’s Meaningful Use rules
    • Data quality in our medical records: my experience
    • “Google Earth for my body”
    • Innovation in the era of Open Data; the Startup Health initiative
  • Session 4: The future of “e”: other e-patients and reshaping the care dynamic
    • We are many: other e-patients and their stories
    • e-Patients and clinical trials
    • Shared Decision Making: Engaged patients at the decision table
    • A glimpse of the future: What Watson may mean for e-patients and their clinicians
  • Plus: hands-on exercises. Bring your own browser – possible examples:
    • Researching disease information – filtering the gold from the garbage
    • Patient communities
    • Group discussions

Curriculum can be customized for future events; see below.

Who should attend

People who want to understand how e-patients are reshaping what’s possible in healthcare. Health workers, government policy people, innovators, investors, anyone.

And patients, and their “e-patient proxies”: friends, relatives, community health workers.

Your instructor

“e-Patient Dave” is a dynamic, highly rated international keynote speaker, author, and advisor on government policy. The Boston Globe called him “a recognized online champion of participatory medicine,” Health Leaders featured him in its “Patient of the Future” cover story and named him (and his physician, Dr. Danny Sands) to their “Twenty People Making Healthcare Better.” See his bio, his Wikipedia page, testimonials, honors, videos of past speeches, and his TEDx talk (with standing ovation!) in the Netherlands this April.

Front cover

Your schwag

Registrants who pay in advance will also receive:

  • A Boot Camp t-shirt
  • Dave’s first book, Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it.) Get it signed on-site!

Registration and Logistics

  • Where: Edelman, 250 Hudson St, New York, N.Y. (Lower Manhattan)
  • When: 10:00 a.m. to 4:00 p.m., Friday, January 27, 2012.
  • Price:
  • $499.
  • Patients just $10, space allowing. Must apply for this status, on the ticket purchase page.
  • 50% off for health professionals who bring one of their patients and promise to practice what we’ll preach.
  • Registration is now open on EventBrite.

    • No recordings, please.

    Future Boot Camps

    We seek partnerships with regional healthcare thought leaders, around  to c0-brand, co-promote, and produce this event, adjacent to major conferences or as an independent event, public or private. See the contact page.

    Optional modules for custom boot camps:

    The e-Patient Boot Camp is in its early days, crafted out of two years of speaking engagements. Additional content is in development for delivery in private or public sessions. Examples:

    • Deep dive on Meaningful Use – regulations and reality from the patient perspective
    • Challenges of diagnosis and how e-patients can help
    • Projects already underway with open health data: the VA’s Blue Button; the Direct Project
    • Healthcare: the only industry where quality’s not defined by the customer.
      • Implications for transformation efforts and quality improvement.
    • Deep dive on shared medical decision making and practice variation: realities, problems, impact on costs and happiness
    • Safety and medical errors: what you need to know and what to do about it
    • Researching: Evaluating what you read, in the mass media, online, and in medical journals
    • Patient communities: finding them, starting them
    • Social media and healthcare: finding what you need, sharing what you have

    Additional modules about inspiration, life, and dealing with disease, not specific to patient engagement:

    • The power of  attitude in the face of obstacles
    • Facing death: my experience as a patient confronting the end of life.
      • Note: Your time will come; your parents’ time will come.
      • Patient & family engagement in end of life decisions
    • Attitude in the face of illness: evidence, and being powerful in the absence of evidence
    • Disease happens while life is happening: getting by, making do, making the most of it – how to “laugh, sing, and eat like a pig” no matter what life hands you.

    As I’ve said before, having faced the end, and survived, I’m using my “free replay” to change the world. Let me know how we can work together.

    Introduction

    June 27, 2010

    My book Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and what healthcare can learn from it) is nearing completion: it’ll be on Amazon in a week or two.

    We who’ve worked on it hope it will provoke thought about how healthcare is changing because of what e-patients can contribute, empowered as individuals and enabled by the internet. To start that process, we’re publishing the introduction.

    Three friends and mentors generously offered introductory essays.
    These essays they have little to do with my story, and everything to do with how e-patients can help heal healthcare:

    Other resources: the book’s home page; previews of advance praise from reviewers

    Putting Information—
    and Knowledge—in Patients’ Hands

    Photo courtesy of Beth Israel Deaconess Medical Center

    By Daniel Z. Sands, MD, MPH

    My primary care physician since 2003.
    The first doctor to support me in being empowered and engaged

    “Knowledge is Power,” wrote Francis Bacon. Nowhere is that more true than in healthcare. Knowledge allows us to care for and advocate for our health most effectively. This is especially true in chronic and serious illness.

    It is said that information is a prerequisite for knowledge (and knowledge, combined with insight and experience, can lead to wisdom), and yet physicians often avoid sharing information with patients. This information asymmetry causes patients to be deprived of the tools they need to care for themselves.

    Why the reason for this asymmetry? [Read more…]

    Videos

    My Second Career –
    from High Tech Marketing to Healthcare Evangelist     

    Latest additions are at the Blog Posts heading below.
    _______

    Having survived a medical “death sentence” with the help of brilliant clinicians and treatments, I’m passionate about healthcare – its problems and its potential. Combining that with my experience as a business analyst and conference presenter, I’ve become an avid speaker on all aspects of healthcare transformation, consumerism, digital health (internet-driven “Health 2.0”) and patient experience and engagement. Below are recordings of some of the talks I’ve delivered. From different angles, each weaves in participatory medicine, high-tech thinking in healthcare, social media, patient engagement – and the joy of being alive.

    TED Talk: “Let Patients Help”

    Over 700,000 subtitles in 27 languages.

    Thanks to all the Dutch visionaries who created this extraordinary TEDx Maastricht event on the future of health, especially the team of Lucien Engelen, who had the vision to make a patient the first speaker named, when the event was first announced.  He saw what others are seeing today – the chant at the end of the video: Let Patients Help heal healthcare!

    Index of archived presentations

    The new era: empowerment and autonomy through AI

    Eleven years after that TED Talk, in 2022 generative AI arrived on the scene and changed everything. (I don’t think that’s an overstatement, do you?) Meanwhile, the world has continued to learn how empowerment works. Two recent talks:

    Blog posts with videos:

    • Impromptu interviews:
      • Reach MD at Alliance for Continuing Education in the Healthcare Professions in Orlando, Florida, Nov. 2017
      • Podcast about clinical trials: Clinical Trials Guru (Sept 2010; 25:59)
      • Dr. Anonymous interview at HIMSS conference (health IT), Atlanta, March 2010

    High Tech

    Quantified Self, at Wired headquarters: “The Quantified Patient”
    December 7, 2009, San Francisco.

    “Quantified Self” is an eclectic group that could only exist in the Bay Area – infogeeks who are into measuring just about any aspect of their lives. QS evenings consist of an hour of elbow-rubbing then a series of short, rapid-fire talks; there’s no time to get bored, and you have to get to the point. The challenge here was to deliver a 45 minute talk in 15 minutes, covering all the bases coherently without the usual depth.
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    Business / Social Media

    1. Swedish Medical Center: “Are You Ready for the e-Patient?”
    October 2010, Seattle.

    Swedish, as it’s known, is not known enough. An innovative center of excellence for many years, Swedish celebrated its 100th birthday with a two day conference – and befitting their leadership, they started with a half day social media conference. Earlier in the year, Communications Director Melissa Tizon scored a coup by snapping up social media goddess Dana M. Lewis. Together they put together a terrific line-up of social media stars, talking about all aspects of social media in healthcare. They asked me open the day, challenging employees and visitors to ask whether they’re ready to make the most of working with today’s engaged patients.

    (A confession: on this speech I muffed the ending. As you’ll see, uncharacteristically for Seattle, the sun came out and shone straight in my eyes. I usually want a more powerful ending. This one ended where it ended. :–))

    2. e-Patient Connections 2009: “Authentic Value: Being Known in e-Patient Communities.”
    October 2009, Philadelphia.

    The setting was a pharma industry marketing conference, the first to be focused on how industry can engage with activated patients, both to empower patients to have a more active role in their care and, in exchange, so vendors can leverage the sometimes enormous contributions patients can make to the industry’s knowledge. The challenge, of course, is that due to many stories of manipulated data etc etc, many engaged patients don’t trust pharma. I drew on my experience in business and in social media to deliver my message: Engage Authentically.

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    Policy / Health IT


    1. National eHealth Collaborative board meeting: “Give Us Our Data
    June 24, 2009, Washington.
    NeHC is an inspiring collaboration of non-profits in Washington devoted to improving healthcare through technology. This meeting occurred during the pivotal summer discussions about defining the “meaningful use” of health IT that’s required in order to qualify for the incentive payments offered in the ARRA/HITECH stimulus bill of 2009. I was invited to speak on the vital issue of giving patients access to their data.

    This was an impromptu talk, which I put together while listening to the previous speakers. It’s an informal recording, not including my slides; it shows my speaking style but not my use of visual aids.

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    2. Keynote to AHRQ’s IT Grantees and Contractors
    June 10, 2010

    This was the first time I was given a full hour to go deep into my points – not just touch relatively lightly on patient engagement, but dig into why it matters.  The depth matters – that’s why I developed the e-Patient Boot Camp – a full-day workshop. Thank you to Jon White at AHRQ for his partnership both in making this possible and in discussing what would be of value to this audience.

    Click below to play the slides. For audio and video, click to download this tiny file, which plays it on AHRQ’s archive. Updated 8/22/15.

    About AHRQ: The Agency for Healthcare Research & Quality is a terrific Federal agency that administers grants and contracts for health-related projects, including health IT. This was a high quality audience of smart people who manage significant projects.

    About the title: Just before this meeting a rumor was circulating that an executive at a medical records company had said “Over my dead body.” The exec was referring to the idea that these systems would be required to be usable by the clinicians who care for us. I was aghast; a December lecture by Ross Koppel had detailed how bad some of the systems were, and believe me, if hospital staff are caring for my loved one, I want them to have a good system, not one that screws up as badly as Koppel describes. So I threw that line in the industry’s face, using it as my title – and connecting it to why this matters to patients.

    We must, must, must stop thinking about systems primarily in technicians’ terms. We must remember that the purpose of healthcare is to deliver care, and tools must support the workers who do that.

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    Academic / Medical

    1. “How Engaged e-Patients are Improving Balance in the Patient-Provider Relationship”
    (Plenary address at Ninth Quality Colloqium, Harvard, August 2010) Click to visit the video, with slides, on their site. Thanks to the conference for making this video free to the public!

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    2. Opening keynote at Medicine 2.0 Congress: “Gimme My Damn Data”
    September 17, 2009, Toronto.

    Medicine 2.0 is an academic congress, the only event I’ve attended where every single session was of interest to me in helping learn how Web 2.0 is changing healthcare by newly empowering everyone – not just patients but physicians and researchers. I was humbled to be invited by Dr. Gunther Eysenbach to deliver the opening keynote.

    In this expanded 40 minute format I was able to cover not just the cancer story but a broader review of what “e-patient” is about, the opportunity to transform healthcare through participatory medicine and through IT, and the sorry state of affairs we face today regarding patients’ access to their data. (Whose data is it, anyway?) Gimme my damn data, so I can help! The opening slide says September 18 – I got the date wrong!

    Part 1:

    Part 2:

    Part 3:

    Part 4:


    3. Special interest keynote at Institute for Health Improvement’s 2010 Forum: “How Patient-Provider Engagement Can Transform Healthcare”
    December 4, 2010, Orlando.

    The Institute for Healthcare Improvement may be the best organization anywhere in the work they do to change the world of healthcare. This year at their annual Forum in Orlando, they did two extraordinary patient-oriented things: they invited fifty patients to attend at no cost, and they put a patient story at the top of the agenda, right after the opening keynote by IHI president Maureen Bisognano.

    Dr. Danny Sands and I told our story from both physician and patient perspectives. Thanks to the Institute for Healthcare Improvement for making this video freely available to the public!

    Impromptu interviews:

    1. Vidcast about clinical trials: Clinical Trials Guru (Sept 2010; 25:59)

    These guys are a hoot: with virtually no budget and freely admitting they’re making it up, they’re forging ahead. They do these informal interviews using Ustream, which is not intended for this sort of thing, but it does archive the video, which they can then post like this. They’re advancing their cause using freely available tools, and here we are: they’re reaching you. That’s healthcare social media – one tiny example.

    Here’s their archive of past Ustream vidcasts and their clinical trials search page, which pulls from the government website ClinicalTrials.gov. For this series all they do is switch on Ustream (a free videocasting service) and get on the phone with someone. How simple is that? It’s then instantly available for publishing on the web. Here’s our informal, unrehearsed talk:

    2. Impromptu interview with “Doctor Anonymous” (March 2010)

    He and the famous Doctor Val, both of the Get Better Health blog, were doing scheduled interviews during the huge HIMSS health IT conference in Atlanta. A scheduled guest no-showed, so Val nabbed me in the hall and pulled me in. There was no plan, but we ended up talking about “What the heck is this e-patient stuff, anyway?? Is it about patients thinking they’re smarter than doctors??” No, it’s not – it’s about being good partners with supportive physicians. The interview worked out pretty well – now I’m a guest blogger on their blog!

    For Patients

    Looking for a patient community? The world doesn’t yet have a great searchable database, but some of us have started lists. Here’s my start – contribute anything more you find!

    DrSpockAn engaged patient plays an active role in his or her care. Or, as e-patients.net founder “Doc Tom” Ferguson said, “e-Patients are Empowered, Engaged, Equipped and Enabled.”

    We who’ve become e-patients don’t wait for our providers to tell us everything; we get it in gear, we ask questions, we do what we can to help.

    Don’t think you’re qualified? Consider the advice on the magnet at right:

    Trust yourself.
    You know more
    than you think you do.

    Radical new advice? No, it’s the opening line of Dr. Spock’s Baby and Child Care, first published sixty years ago, in 1946.

    Convinced, but not sure where to start? As time goes by I hope to develop tutorial materials. If you have a project, or requests or ideas, contact me. It starts with this:
    .

    Understanding what we read about health information

    To take Dr. Spock’s advice one step further, you may not be a health professional, but you’re probably capable of understanding a lot more than you think. I’m committed to gathering and sharing as much as I can to help with that.

    As you educate yourself, either through medical publications or through the mass media, it’s important to know that in both cases, some of what gets published is high quality but a lot is not, and you can detect the difference.

    • A piece may be written from a biased perspective (even plain old paid endorsements)
    • It may be fair but written imprecisely,
    • It may have been written brilliantly but edited in a way that leaves the wrong impression. (Some editors are well trained but make mistakes; others aren’t scientifically trained.

    In any of those cases, the words that reach your eyes may lead you astray. And when your health is at stake, the last thing you need is bad advice from a channel you thought you could trust.
    .

    e-Patient Skill 1: Wise up about health news.

    A great resource is Health News Review. healthnewsreviewManaged by Gary Schwitzer, a journalist with terrific medical experience, the site reviews health news coverage with clear comments that make it easy for you and me to learn how to read carefully and spot important missing information.

    Modeled on Media Doctor Australia, which spawned Media Doctor Canada, Health News Review is also a great learning resource for writers, editors (and even bloggers!) who want to improve their science writing.
    .

    e-Patient Skill 2: Wise up about the statistics you read. Learn how to interpret them.

    When we’re in a crisis it can be hard to hear “We just don’t know what your odds are.” That can lead us to latch onto any available number, but it may or may not be useful information.

    Statistics can be misleading. Sometimes it’s intentional (the old “lies, damned lies, and statistics” thing), but e-patients also need to wise up about interpreting statistics that are published with the best intentions.

    See, the whole purpose of statistics is to give us useful insights into the unknown, by looking at things that happened in the past. It can work, if you have no better information and if the current situation is a good match for how and when the study was done. Those are the factors you need to look for.

    In my own case, I read that the median survival time for people in my condition was 24 weeks (5-1/2 months). Does this mean “they gave me 24 weeks to live”? No.

    • It means that in whatever study they reported, the middle patient died in 24 weeks.  It tells us nothing about any other patient.  They might all have died in 24 weeks, or everyone beyond the middle patient might still be alive today. You can’t tell, from the information given.
    • The next problem was that although the study was the most recent published data, the circumstances were already obsolete. It takes years to design a study, start it, and watch people get treatment and then live or die. This is especially challenging when treatments are rapidly evolving: the most useful information may not have been published yet. And you may be able to help find it.

    As yet another dimension, remember that statistics apply to populations, not individuals. Want proof? Consider this: the average person has one ovary. That’s absolutely true – but it gives you no useful information about any individual.

    Here are some of my past posts on statistics:

    • Making sense of health statistics – discusses a terrific 40-page article about how even writers, policymakers and even physicians(!) often misconstrue published numbers. The article’s long-ish, the post isn’t.
    • Evidence-based medicine (“EBM”) – a topic every e-patient needs to understand, for what it is and what it isn’t. EBM is an important response to research that showed wide variation in how often various procedures were done. (Hysterectomies were one example that particularly turned my stomach.) Today the gold standard is to make care decisions based on evidence. This is good but it has its limitations.

    And I’d be remiss if I didn’t cite the granddaddy of all patient-empowerment stats articles, The Median Isn’t The Message, by famed scientist Stephen J. Gould. Gould outlived the “median survival time” for his mesothelioma (eight months) by 20 years, eventually dying of something else – in other words, the disease didn’t kill him at all.

    Personally, I’ve outlived my median survival by a factor of 5.8. So far.

    Get educated, get engaged, get empowered. Get E.

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