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”
Approaching 600,000 views; subcaptions 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 – the chant at the end of the video: Let Patients Help heal healthcare!
Index of archived presentations
- Blog posts with videos:
- NEHIMSS 2019: teaching Patient-Clinical Partnership with role play – and a song, with Dr. Danny Sands (June 2019)
- HL7 FHIR DevDays 2018: From ‘Let Patients Help’ to ‘Get Out of My Way’: why some patients want ALL their data now, (Nov. 2018)
- Informal interview with @Chimoose (Greg Matthews) about the business value of the patient’s voice, Oct. 2014 (posted January)
- From MedicineX 2013: Social Media is a Pipeline of Patient Needs and Perspectives (18 minutes)
- Digital Health Days, Stockholm (“the Land of Nobel”) (August 2014):
- 20 Minute Opening Keynote, tying our movement to the history of the Nobel Prize in Medicine
- 9 minute hallway interview – my views on additional topics at the event, especially Quantified Self, Susannah Fox’s findings on Twitter vs Facebook
- The closing panel (50 minutes total)
- “Dagens Patient” workshop at Karolinska Institute (30 minutes)
- My Call to Action at the Blue Button Plus Developer Conference, NY (event was July 2013, video was released Feb 2014)
- AMIA Keynote (standing ovation), Nov. 2013
- One of my best speeches in years: Keynote Presentation at NEHI’s 2013 Innovation Conference: Patient Engagement 360
- National Council of State Boards of Nursing, August 2013 (47 minutes)
- ONC Consumer health IT event, Sept 2013 (14 minutes)
- SAS Institute, May 2013 (56 minutes)
- “My Health Counts: e-Patients” (WNED-TV program, 27 minutes; my part’s about 12 minutes)
- “I want the best to thrive” – keynote to hospital boards and executives, St. Luke’s, Boise ID, Feb 2013 (65 minutes)
- “Information at the point where it’s needed can save a life” – Joseph H. Kanter Family Foundation (36 minute dinner speech)
- High Tech: “The Quantified Patient” (The Quantified Self, December 2009; 14:43)
- Academic / Medical:
- Doctors and Patients on the Same Page: Welcome to the Age of Participatory Medicine/Open General Session: SIIM (Society for Imaging Informatics in Medicine) (June 2018)
- “How Engaged e-Patients are Improving Balance in the Patient-Provider Relationship” (Plenary address at Ninth Quality Colloquium, Harvard, August 2010; 30:12)
- “Gimme My Damn Data” (Opening keynote at Medicine 2.0 Congress, September 2009; 40:00)
- “How Patient-Provider Engagement Can Transform Healthcare” with Dr. Danny Sands (Special Interest Keynote session A1 at IHI Forum, December 2010; 73:13
- Business / Social Media:
- Policy / Health IT:
- Impromptu interviews:
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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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.
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.
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.
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!
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!
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!