e-Patient Dave

Power to the Patient!

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Evolution 4: 2009 part 2 – a health I.T. “information trainwreck”

Screen capture from the Information Quality Trainwrecks blog’s post about what happened with my data. (I’m not making this up.)

Fourth in a series of retrospective posts, reviewing the ten years since my cancer and how my shifting perspective has altered what I’ll be doing from now on.

I’m generally doing one post per year, but so much happened in 2009 that it’ll take several. In particular, this episode in the spring of 2009 had such unexpected impact that I’ve had to think a lot about what to say. Sorry for the delay, but as you’ll see, this is an example of the important question that arose here.

In May 2008 my hospital had announced that their Google Health interface was live:

… a patient, with their consent and control, can upload their records to Google Health in a few keystrokes. There is no need to manually enter this health data into Google’s personal health record, unlike earlier PHRs from Dr. Koop, HealthCentral and Revolution Health. …

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The power of “consultative speaking”: keynote at Leapfrog Group’s annual meeting (Speaker Academy #29)

This is the latest in the Speaker Academy series, which started here, but it’s also intended for my potential speaking clients.

I do what I call “consultative speaking.” It’s precisely comparable to consultative selling, in which “the emphasis is on what the potential customer wants and needs.” In one sense, I learned this in industry when I worked in marketing – every speech to any meeting has to be focused on the audience’s interests and concerns, or they’ll dive into their emails. In another sense, I learned it from Kent Bottles MD, who said that he always asks clients, “What outcome would make you say that I really knocked it out of the park?” Today, thanks to Kent, with every speaking client I have what I call a “home run call,” and build my speech around that.

Today I’ve uploaded the video of a speech I did in December for The Leapfrog Group‘s annual meeting.

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News coverage 2010-2014

Healthcare IT News cover Nov 2013

At right: Cover story in Healthcare IT News, Nov 2013

See also recent coverage

2014

2013

2012

2011

2010

 

Book mentions

As a cultural change agent I’m always grateful when thoughts I’ve advanced prove useful to book authors.  Here are the ones I know of. (I’m happy to be interviewed; see the contact page.)

Patient Perspectives Advisor

Client meeting 2013For decades thought leaders like Dr. Warner Slack have said patients are the most under-used resource in healthcare. He was talking about health IT, but now the new role of the patient is mainstream.

In 2012 the Institute of Medicine published a major report, 382 pages long, called Best Care at Lower Cost: The Path to Continuously Learning Health Care in America, which said, right up front (Table S-2 in the Executive Summary): of the four pillars of the future of medicine, #2 is …

Best Care at Lower Cost cover
Click to purchase original report on the National Academies Press website

Patient-Clinician Partnerships

Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team. [emphasis added]

Anchored on patient needs and perspectives – not as a last-minute thing; anchored there, from the start.

The problem is that culture change doesn’t spread fast (most people have never seen that statement), and it leaves us with the question: How do you do that? What do they mean by that?

As a former product manager in my pre-cancer life, I understand business perspectives, customer relevance, and good user experience. So, to supplement my speaking income I offer advisory contracts to companies and academic grantees working on all aspects of patient-centered thinking and patient-centered care. In short, I advise on “patient needs and perspectives.”

For additional background, I serve on the BMJ’s patient advisory panel, interacting with some of the world’s most activated patient voices, and have spoken with audiences at nearly four hundred conferences in fifteen countries and participated in a hundred other events. Contact me to discuss whether your project could provide mutual value in these changing times.

Advisory work – present:

Advisory work – past: 

Working groups:

None at present.

Healthcare speaking & lectures

For speaker availability and bookings see the Contact page.

"e-Patient Dave" deBronkart head shot
Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0.
  • Top spokesman for patient experience, satisfaction, and engagement as well as disruption in healthcare
  • TED Talk with standing ovation
  • High tech veteran who survived Stage IV kidney cancer and became global healthcare analyst
  • Well respected by medicine: Mayo Clinic’s 2015 Visiting Professor in Internal Medicine; HealthLeaders “20 People Who Make Healthcare Better”

See the Digital Health Manifesto I coauthored with medical futurist Dr. Bertalan Meskó in February 2018.

Cancer survivor “e‑Patient Dave” is an international keynote speaker and academic lecturer who consistently earns extraordinary ratings by understanding each audience to deliver the client’s unique objective.

In addition to hundreds of conference speeches, panels, policy meetings and corporate events, academic lectures have become the next frontier for the social movement of transforming the role of  the patient. Resources:

“Consultative speaking”

My approach in every case is to understand your specific needs and objectives. In business, consultative selling has become the norm, and it’s my approach to creating each speech. And as a culture change agent, I’m constantly interested in exploring with clients any new topic that’s appearing in their organizations.

Top healthcare topics, 2019

As the culture of medicine has evolved to newly recognize the role of patients in all aspects of health and care, explorations of patient engagement have expanded beyond my traditional topics of “Let Patients Help” and health data rights.  As a foundation issue in health and care, the role of the patient touches everything. Recently added topics:

  • Superpatients: Patients who extend science when medicine’s out of answers. Amazing, inspiring stories of ordinary people overcoming impossible odds. New book, January 2020.
  • “Let Patients Help” / e-Patients: Empowered, engaged, equipped, enabled and Health Data Rights
  • Patient Experience, Empowerment, Engagement: a business leader’s view: As co-founders of the Society for Participatory Medicine, my doctor and I are international thought leaders on partnering with patients, and I authored one of 2017’s highest-impact articles in Patient Experience Journal. With humor and insight, we share lessons learned from my many patient experiences and my business career about the value of hearing customer perspectives. We tie them to business outcomes in three domains: customer experience, business and social change, and cultural transformation.
  • A futurist looks at AI in healthcare: What’s the matter with Watson? Famously, IBM Watson failed to improve cancer care, blowing hundreds of millions in the process. I was part of the earliest meeting that found cracks in Watson’s intellectual armor – cracks that turned out five years later to be its “cause of death.” We’ll discuss the fatal flaws that made the Jeopardy genius stumble in oncology and how we should think differently about medicine’s AI-enabled future.

Additional topics

  • e-Patients: Empowered, Engaged, Equipped, Enabled. My classic topic, delivered hundreds of times in 18 countries.
  • The Elderboom: how engaging with patients can change the future of again. More than half the humans who’ve ever been 65 are alive today, and I’m one …. yet there are only 7,000 board certified geriatricians in the US. This looks like a care disaster, but it’s the next logical step: we have so many elders because medicine kept us from dying! How can patient engagement alter what’s possible?
  • Palliative Care: Let patients tell us what care really means. First keynote on this subject was to Compassionate Care Coalition of California; standing ovation. Video available on request.
  • Genomics and Precision Medicine: This knowledge really is power. I survived kidney cancer and nobody knows why. What’s becoming newly possible?
  • The opioid crisis: integrating behavioral and primary care.  Since 2012 I’ve been a patient voice in the Agency for Healthcare Research & Quality (AHRQ)’s project to merge behavioral and mental health into primary care, the Integration Academy. The project has renewed urgency in the era of surging opioid deaths. Beyond opioids, all behavioral and mental health problems dramatically affect the patient’s role in health and care: Who can perform any job well if they have mood problems or worse? In this extremely current time-sensitive talk I will share the perspectives of the academics, clinicians and financial experts I’ve worked with and specific next steps providers can take.
  • Beating pre-diabetes with apps and a course at the Y: Type 2 diabetes is a major concern under accountable care and population health – but I’m living proof that change is possible. I got that diagnosis in my 60s and beat it by successfully changing my behavior, aided by e-health apps. I’ll share the story of how I changed my diet, walked a lot, then ran a mile (for the first time in my life!), became a 5K runner, and wound up with a cover story in a diabetes journal. As always I tell it with humor amid the insights, and and emphasis on the patient’s perspective on a chronic diagnosis.
  • Patient Empowerment Around the World: From New Zealand and Australia to Switzerland, Stockholm and Dubai, I’ve had the privilege of learning from audiences and sponsors in hundreds of events in 18 countries. OpenNotes, patient rights, transparency and cultural trends all vary widely, from the best (New Zealand’s avid adoption of e-health) to countries that openly advertise “Don’t google it – trust a professional!” What can we learn from the different stages of this rolling wave of social change?
  • Population health: the role of empowerment and engagement: The shift to accountable care means providers have more reason than ever to help patients  succeed between visits – but how to do it?? As a co-founder of a medical society devoted to patient-clinician partnership, I share from personal experience and evidence how medicine is starting to understand what empowerment and engagement mean in practical clinical terms. Using validated models from empowerment movements outside healthcare, I’ll explain how it really works (how it feels!), and how data, training, and access to coaching can transform what your patients achieve.
  • The Quantified Self: How the data patients collect, and apps patients develop, are changing what’s possible in managing their care. Examples: Hugo Campos, Dana Lewis / #OpenAPS, Michael Seres of 11Health
  • How Patient Voices are changing Academic Journals. As a member of the BMJ’s Patient Advisory Panel I’m seeing how both the publishing process and peer review are altered when the ultimate stakeholder (the patient) is invited to guide research.
  • MACRA, accountable care and population health: Let patients help! The shift from fee for service to accountable care means there’s plenty of reason to help patients be successful at home, beyond direct contact with providers and services. How to do it??
e-Patient Dave delivering guest lecture at Semmelweis University, Budapest
Guest lecture at Semmelweis University, Budapest

Academic and medical lectures

As our movement has progressed, the work has migrated beyond medical conferences into academia and provider institutions. I was the Mayo Clinic’s 2015 Visiting Professor in Internal Medicine, addressed the 100th annual meeting of the National Board of Medical Examiners, and have delivered Grand Rounds, seminars and lectures as part of courses, as well as honorary lectures. References available on request.

My intention in all cases is to serve your curriculum and your learners.

Let’s talk.

Visit the Contact page.