e-Patient Dave

June 12, 2015 By e-Patient Dave 4 Comments

Upcoming events & media – June 2015 edition

Clip art of newspaper boy — Public domain

This spring I had a couple of cases where people said “I wish I’d known you were coming – we could have had coffee!” (That’s always compelling to me…) So I’m going to try publishing a monthly update (more or less) of upcoming travels, newly added future events, and maybe a few other things. Short & sweet. Thank you to Casey Quinlan, a focused production machine if I ever saw one, for making this happen!

Underway now:

June 7-13, Lucerne, Switzerland: IKF’s annual Swiss tour. Multiple keynotes and private meetings.

Upcoming travels & webcasts

June 16-17, Chicago: NEHI’s National Healthcare Innovation Summit. Attending.
June 17, London (via web): The King’s Fund, Digital Health Days Congress. Speaker.
Link to come next week: June 26, 4:30 pm New York time, webcast: 20 minute speech “Being Heard as Possibility,” part of Rebel Jam, hosted by Rebels At Work, Corporate Rebels United and Change Agent Worldwide.
- I love this group! I first learned about them from Helen Bevan in 2013 and blogged about this movement on Forbes: The “Organizational Radical” Movement Comes To Medicine
June 29, London:
- Private corporate event
- BMJ patient panel gathering

Recently added events (stay tuned for details!)

Early September: Europe (to be announced)
Mid September: 10 day tour of Alaska! These people are getting it bigtime and spreading the word!
September 23-24: Medicine-X | Ed Bringing e-patient thinking to the medical education curriculum!
November 4, DC: American Psychological Association Presidential Innovation Summit
November 11, Sacramento: Transforming Healthcare Summit

My first-ever article in a clinical practice journal where I’m listed as First Author(!)

“Open Visit Notes: A Patient’s Perspective and Expanding National Experience,” in ASCO’s Journal of Oncology Practice. It’s open access (free), to allow reading and sharing by patients.
- Full text, or PDF of the print pages; article extract page here.
- Thank you to Beth Israel Deaconess OpenNotes team, and to the journal for making it open access.

Recent media mentions:

Book: The Digital Doctor: Hope,Hype, and Harm at the Dawn of Medicine’s Computer Age by Bob Wachter (April 2015)
May issue of ImproveDx: Newsletter of the Society to Improve Diagnosis in Medicine. In “Improving Communication of Test Results in a Changing World” by Susan Carr.
May 30, IntrepidNow: #TalkHIT with CTG – Dave deBronkart (ePatient Dave), The Original ePatient Advocate
May 28, AstraZeneca Health Connections: E-Patient Dave: “The Internet Brings Patients Together”
May 14, Mayo Clinic “In the Loop” “‘Healing Words’ Program Creates Space for Patients to Reflect and Clarify” about my interview on facing death with hope

June 5, 2015 By e-Patient Dave Leave a Comment

Dr. Molly Coye joins NEHI!

Long-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.

June 3, 2015 By e-Patient Dave 2 Comments

My comment submitted for Meaningful Use Stage 3 last week

This is long but if you’re interested in patient data access I hope you’ll find time to read it. Something important is afoot in federal policy.

Updated 6/4 – added a link to a doctor’s blog post

Over on e-patients.net, the blog of the Society for Participatory Medicine, for weeks there have been blog posts about an important moment that’s happening right now in Federal health policy. The details are complex and geeky (imagine that, with Federal policy) but here’s a tiny tiny nutshell, for readers of this blog:

In the 2009 federal stimulus bill (not as part of Obamacare), billions of dollars were designated to help doctors and hospitals finally computerize.

To get the money, they have to not just buy the system and let it collect dust; they have to put it to “meaningful use” – “MU,” as it’s often known.

Not surprisingly, what you have to do to get the money is a topic of hot debate and much lobbying.
- Remember your civics class? The Legislative Branch writes a bill, and then in the Executive Branch, regulators write the regulations that put the law into action. The regulators get to say specifically what’s legal and what’s not. (See, lobbyists aren’t just on Capitol Hill – they talk to the Executive Branch too.)

An important part of this discussion for several years has been whether they have to give you and me our data that’s in their systems. Basically: can they use those systems to create your medical record, hoard it (keep it from you), and still get their federal reimbursement??

[Read more…]

May 29, 2015 By e-Patient Dave 1 Comment

“The unfolding science of patient engagement”: foreword in a new book

Photo of the foreword page In 2013 I was interviewed during the creation of a book called Person-Centered Care, part of a project called Co-Creating Healthcare produced by Danish firm Sustainia and the German firm DNV GL. It’s a remarkable project – a series of three substantial books, all distributed as free downloads on the project’s site. (They also have print editions, but I don’t see any way to buy one!)

In January they completed the third phase of the project, a series of roundtables in Europe, China and the Americas: The State of Healthcare: From Challenges to Opportunities. I participated in the Washington meeting, and they asked me to write a foreword for the final book, which was released last month.

Because the foreword focuses on the “defining a new science of patient engagement” theme I’ve been writing about, I want to re-post it below.

As you can see by browsing the books on the project site, the whole Co-Creating Healthcare project is amazing in its depth (and the beauty of the book spreads), so I’m just thrilled that for the foreword of the final book, they chose this idea. Thank you!

The unfolding science of patient engagement

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May 17, 2015 By e-Patient Dave 1 Comment

Speaker Academy #23: First, get into their world (presentation at CGT)

This is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to speak on a subject but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

I co-presented Saturday at the 15th annual Conference for Global Transformation (CGT), a talk that was very different from any other I’ve done, because the context wasn’t healthcare per se – the context this time was, well, global transformation. This year’s theme is “Listening for Workability.” I haven’t discussed it much, but this company’s principles form the foundation of my approach to communication, which is a big part of this series.

This was a very short talk, because after my co-presenter (neurologist Dr. Rochelle Frank) spoke from her perspective, we got into discussion with the whole group, to see what they see as newly possible. I don’t think I’ve ever seen so many hands go up – because that’s what this event is about: new possibilities.

(I’ve padded out the slides here, for more clarity as a standalone slide deck. Dr. Frank and I were greatly assisted in planning this session by another clinician, nurse practitioner Lorin Bacon.)

Nerve alert: this advice may not be easy to hear, especially for people who’ve been harmed or have suffered great loss, as many of our patient voice friends have been. But I implore you to review #6 in this series: What could be said that would make any difference? There isn’t much point in saying anything else, is there?

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May 12, 2015 By e-Patient Dave Leave a Comment

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

This 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.

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.