e-Patient Dave

Power to the Patient!

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Speaking Nov. 10 at Sacramento Health 2.0 … join us!

Health2SacBEveryone in the “health 2.0” world knows that the Health 2.0 conference is the conference in the health 2.0 world. It’s where everybody has to be, if they want to be known in that high-powered innovator world. Proof got even deeper when, a couple of years ago, they shifted venue from downtown San Francisco to the belly of the beast: Silicon Valley.

Less well known is that Health 2.0 has a number of outlying communities, and one is in Sacramento, the state capital.  Next month I’ll be speaking there, at a free event open to the public.

Laura GoodIt’s 6:30 to 8:30 p.m. at Hacker Lab, 1715 I Street. Register here! And here’s the Health 2.0 Sacramento site. Tentative agenda:

6:30 – 7:15 Mingling and Munchies
7:15 Kickoff
7:30-8:15 e-Patient Dave (including time for Q&A)
8:15-8:30 Mingling

A special thanks to one of my earliest Twitter buddies, @GoodLaura – Laura Good – who, it happens, is a startup geek in that very area and involved with Health 2.0. My first private twitter messages with Laura were in 2009! (If you must know, it was about some typesetting arcana that were raising puzzles in Microsoft Word.) How sweet it is to cross paths IRL with long-time online peeps!

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Uptown Funk comes to medical education: My first “lecture” to incoming students


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Lucien Engelen head shotRegular readers know that a large part of my becoming a global advocate has been the vision and influence of Lucien Engelen at Radboud University Medical Center (RUMC) in the town of Nijmegen, on The Netherlands’ eastern border. Way back in 2010 he announced that his upcoming  TEDx would be primarily about patients; the TED Talk I did there put my speaking career into a catapult; then he put his own money where his mouth is by launching the Patients Included badge#PatientsIncluded initiative, saying he would not attend any event where patients weren’t actively encouraged to participate; and he has continued to lead in thoughts and actions, every year since (including 3D-printing my lung metastases last year, below). Lucien is the standard, the exemplar of the “pay me with action” clause of my price policy.

My lung metastasesFor that reason, when he asked me this summer to participate in something even newer – something brand new – I immediately said yes. What was it? A three day event, “Inaugural Grand Rounds,” launching a completely redesigned curriculum at RUMC – redesigned with patients participating in the process. Yes, patients – people with no medical experience – except as “the ultimate stakeholders”; as patients, helping guide how we teach students.

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Dr. Molly Coye joins NEHI!

Dr. Molly Coye headshotLong-time readers know that my work is going through something of a transition, with one foot in the “grass roots / we ain’t got nothin” world and the other foot in the “BMJ author / Mayo Visiting Professor / NEHI patient engagement fellowship” world. Long-time readers also know I’m nothing if not candid, so while it’s thrilling to be moving into more dignified circles, there’s still a part of me that reacts to news like this by just saying:

OMG: Molly Coye is joining NEHI!

Molly Joel Coye, MD MPH (@MJCoye) has left UCLA’s Global Lab for Innovation in Health and has become NEHI’s new Social Entrepreneur in Residence. Why am I excited? Who is Molly Coye? Well:

  • An elected member of the Institute of Medicine, which I often quote, she was a co-author of their most-cited reports on medical safety & quality, To Err is Human and Crossing the Quality Chasm. (This makes her a goddess, on my planet.)
  • From NEHI’s announcement: “Dr. Coye has also served as Commissioner of Health for the State of New Jersey, Director of the California State Department of Health Services, and Head of the Division of Public Health Practice at the Johns Hopkins School of Hygiene and Public Health” [and much more]. (And on top of her medical work, she has “an MA in Chinese History from Stanford University, and is the author of two books on China.”)
  • From UCLA’s announcement: “Under Dr. Coye’s leadership, the Institute for Innovation and the Global Lab have been tremendously successful and productive. Among the many important projects overseen by Dr. Coye and her team are included the Doximity Colleague Connect pilot, the Zipnosis online diagnosis and treatment service, the Vivify Health Remote Home Monitoring Platform, the Virtual Visits pilot project, the Patient Voice user experience-based design approach to value-based care, and the launch of Real Time Referrals and eConsult.”
  • From the iHealthTran blog in 2013: “She received the Information Technology Innovator Award from HealthCare Informatics and was named one of the 25 Most Influential Women in Healthcare by Modern Healthcare Magazine. Elected to the National Academy of Sciences’ Institute of Medicine in 1994, Dr. Coye co-authored two landmark reports on healthcare quality, To Err Is Human and Crossing the Quality Chasm. She also chaired the IOM’s Committee on Access to Insurance for Children, and co-chaired the Committee on Patient Safety Data Standards.”
  • Finally, I asked the members of our Society for Participatory Medicine (patients and clinicians) if any of them have first-hand experience with her, and within a few hours got these responses:
    • “She is on my ‘good-guys’ list”
    • “I’ve worked with her … She is thoughtful, well organized, and pleasant to work with.”
    • “Sincere and an extraordinarily diplomatic ambassador.”
    • “delightful to work with and an amazingly competent person”

Well.

I like innovation, optimism, brains, insight, and practical experience. And as I blogged about NEHI when I first got this fellowship, NEHI is action-oriented – not just a “think” tank, a “think-and-do” tank. They’re about “evidence, action, and policy impact.” Thanks too to the Commonwealth Fund – as the NEHI release says, “Dr. Coye’s work will be supported in part by a grant from The Commonwealth Fund.”

So this will be fun. And productive, I’m sure. Life is good.

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Join us at NEHI’s “Innovation in Oncology” in DC, May 27

Oncology event invitationThis an open invitation to a free event in Washington, Wednesday morning, May 27, sponsored by NEHI, where I have my patient engagement fellowship. Anyone’s welcome, but a key focus is how new insurance payment models will affect cancer patients, so I particularly encourage patient voices, and especially people who are interested in how insurance plans affect patients.

Register here on the NEHI site. (Scroll down on the page.)

From the event page: (remember, this is about payment innovations, not new treatments)

As alternative payment models emerge in areas like oncology, it is critical to explore the impact of these new models on patient access to innovation. The stakes are high for patients, clinicians, innovators, and the system at large.

Join us for a multi-stakeholder roundtable to explore how new payment models will impact patient access to innovation in oncology and what policy actions are needed to sustain innovation.

I’ll have more to say (more background information) about these payment innovations as the day grows closer. One place to start is this 90 minute webinar recording from last August.

Event format

This kind of NEHI event is highly interactive. A panel of seven (see agenda page; I’m one) will hold two 75-minute discussions with much Q&A from the audience. Moderator is Tom Hubbard, NEHI’s vice president of policy research – a great guy – very knowledgeable, approachable, and personable.

Why patient presence matters

As I say over and over, “patient needs and perspectives” are now an official priority in healthcare. The Institute of Medicine said it in 2012:

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.

NEHI gets this: You can’t include the patient perspective if patients aren’t there. For years patient advocates have appealed to meeting organizers to have patient voices at the table – not just talked about, but actively in the discussion. If you as a patient, or your organization, is interested in this subject, register and come to this half day event.

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Health 1.0, 2.0, 3.0: today’s flow of information has changed what’s possible

This 51 second animation accompanies my article last week in the BMJ, “From Patient Centred to People Powered: Autonomy on the Rise.” The video expresses, concisely, a slide that for years I’ve presented in 3-5 minutes. It’s an idea first published back in 2010 by Lucien Engelen, during the same time period when he was preparing for the TEDx Maastricht event in April 2011 where I spoke. It shows how the flow of valuable information has changed, which makes new things possible, as in all other parts of life.

From the BMJ article: [Read more…]

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Advisory client Antidote raises $13.5M for clinical trials searches

Screen capture of TechCrunch screen capture
Click to view the TechCrunch piece

In September 2016 TrialReach rebranded itself Antidote, to shift focus away from the “solution” (the clinical trial), focusing instead on the patient’s need: “I have a problem, and I need an antidote.”

My advisory client TrialReach is on the big hot TechCrunch site today, for their success in raising another $13.5 million (here). I don’t do much advisory work, but to this one I said yes, because it’s a big push forward in making vital information more accessible to the ultimate stakeholder – the patient – and it’s done in way that blends three things I’m passionate about: good business sense, modern technology, and patient-centered design.

(I don’t have stock in the company – not even a tiny amount; my policy is that I sell advisory services, but I don’t want to be in a position of literally having a stake in how well their stock does. And, as anyone who knows me knows, nobody could pay me enough to say or do something I don’t believe in. So I’m talking about this company because I believe it deserves attention, not as part of any quid pro quo.)

What TrialReach is

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