e-Patient Dave

Power to the Patient!

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A mistake, and an apology to Medicine X

Medicine X 2016 promo graphic

In life, in relationships, and in social movements, sometimes things get messy. Despite all the things I’m committed to, I made a mistake last fall while extremely over-tired, and behaved offensively to someone I didn’t even know, a volunteer at the wonderful Stanford Medicine X conference (MedX), about which I’ve written so favorably here and on e-patients.net and even in the BMJ. They’ve decided to ask me to sit it out for a year (i.e. not attend), and I accept it – it’s reasonable. I apologize to MedX and I apologize to the volunteer.

I believe in introspection – “the examined life,” as they say – and continuous self-improvement. So later I’ll say a bit more about what I’ve learned while thinking about this. (Update: that post is here.)

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“Knowledge is Power. Power to the people.” (Guest post for Philips Healthcare)

For healthcare to achieve its best,
empower the patient and family.

Here’s a composite of four quote graphics Philips tweeted yesterday for World Cancer Day:

Memes Philips tweeted with links to the post

I’ve had the good fortune to cross paths with Philips Healthcare several times, most recently for a speech (video) at the big RSNA radiology convention in Chicago. I just love what they’re doing in partnership with REshape and Innovation Center at Radboud UMC, where my crazy-amazing friend Lucien Engelen is rapidly creating the future of health and care with Philips and Salesforce.com. Seriously: watch what will come out of that threesome!

So when Philips asked me to do a guest post for yesterday’s global #WorldCancerDay, I said sure. It ran on their blog yesterday.

“Knowledge is Power. Power to the people.”

For healthcare to achieve its best, empower the patient and family.

When social change meets innovation, new things become possible. That’s what’s happening in the patient world, as “participatory medicine” is empowered by patient access to all kinds of useful information.

When the Web was born the term e-patient was coined by “Doc Tom” Ferguson to describe a new kind of patient, no longer in the dark but thoroughly empowered to achieve new things – because they have unprecedented access to information. The idea has matured and deepened, and now, ten years after Ferguson’s death, is coming of age with the signature catch-phrase ‘empowered, engaged, equipped, enabled’.

It’s a moment we should celebrate, because for too long medicine has edged away from the changing landscape of consumer power. Every industry from music to travel to supermarkets has gone digital, sharing knowledge and power and flexibility with their consumers, but medicine has lagged behind: many are not on board, and it’s holding healthcare back.

This is serious stuff: the information revolution has touched my medical life more than once – sometimes in life-saving ways:

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Reusable building blocks: a speech (to the Philippines!) by video Q&A

Click to watch the video series in “couch mode” (autoplay) on Vimeo

One of the major enablers of the e-patient movement is the internet. In addition to serving as a vast widely-accessible library, it provides “information capillaries” that make it possible for vital information to flow to the point of need – without centralized control. My life is just one of many that’s been saved by this radical change in what’s possible.

Another mechanism is that the Web has made possible a truly incredible collection of tools by which we can assemble combinations of things that we find useful – again, without any centralized control. One example of this is MOOCs (Massive Online Open Courses), which I’ll be writing about more soon: the content for a course is made available to anyone who has internet access, which is enormously different from requiring that someone travel to the school.

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Washington Post and that viral coffee mug: two important posts on the e-patient blog

Google doctor mug
Photo: facebook.com/TheEmergencyMedicineDoctor

A quick note to draw your attention to two posts this week.

First, the coffee mug at right has gone crazy viral on Facebook, with over 100,000 shares in the first few days. It’s a great big mudpuddle splash, smack into the changing e-patient reality compared to how many doctors were trained. Yes, there’s junk on the internet and some people (including some patients) are loco. That does not mean patients should just shut up and expect the doctor to know everything. So, on the e-patient blog I posted this explanation:

The truth about that “your Googling and my medical degree” mug

Second, yesterday’s Washington Post had a great, well researched and comprehensive piece about medicine listening to patients. Reporter Susan Allard Levingston interviewed and cited many people I know and several I don’t, including my doctor Danny Sands, Mayo’s Victor Montori, ACOR, SmartPatients, Inspire.com, PatientsLikeMe, the BMJ’s patient partnership program that I’m a part of, and more.  My post about it:

Washington Post nails it about patient-clinician partnership

The timing of this clash couldn’t have been more perfect to illustrate the topic of my Grand Rounds as Visiting Professor at the Mayo Clinic last March: We are at the cusp of a profound paradigm change in medicine.

The whole concept of what “patient” can be and do is evolving – but most people don’t know it. Many patients and many docs think patients couldn’t possibly know anything useful; that is no longer the case, and culture clash is happening.

Honestly, this is the work of evangelism – spreading the word, making the case. And you know people are starting to notice when “the empire strikes back,” as illustrated by that coffee mug piece.

Please:

If you don’t yet know about the Belgian health department’s anti-googling campaign (taxpayer-funded!), and you don’t yet know about the British teen who died because her docs told her to stop googling, go read that coffee mug piece. Then read the comments from patients who helped their docs make a correct diagnosis. Then skip over to the Washington Post piece, and read about “the real reality.”

And spread the word! Culture change only succeeds when people spread the word. Thank you!

 

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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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Washington Post: “How is the doctor-patient relationship changing? It’s going electronic.”

WaPo article 04-26-2015It appears the Washington Post is getting seriously interested in both the value of, and the consumer perspective on, health IT. This is a good thing, because (a) the whole purpose of healthcare is to take care of patients, (b) patients (that would be you) are the ultimate stakeholder, (c) no patient can contribute their best to their care if they can’t see the information, (d) nor can any doctor or nurse do what they’re trained to if they don’t have all the information, and (the good news) (e) we all can do better if we have the information.

This is not some crazy call-to-action from the fringes: it’s mainstream. I mean, three years ago the Institute of Medicine (the pinnacle of medicine in America) said medicine depends on “Patient-clinician partnerships” with “Engaged, empowered patients” and must be “anchored on patient needs and perspectives.” And, as my primary physician Dr. Danny Sands often says, “How can patients participate if they can’t see what I see?”

Tuesday’s Post has a pair of articles by Suzanne Levingston. I’m quoted in the first, and Dr. Sands is quoted in the second:

How is the doctor-patient relationship changing? It’s going electronic (above, ~1500 words) is a broad survey of how medicine’s landscape has altered because you and I have the internet, which means we can for the first time in history connect to two pivotal resources: information we could never see before, and each other. (My own story, including how the internet helped saved my life, is on my About page; it was also published in the British Medical Journal two years ago.)

WaPo 2 2015-04-28There’s lots of health-care technology out there. How do you choose? (490 words – a sidebar, I presume) is a brief overview of the wide range of apps and info tools available today. As regular readers know, I view these tools as exactly analogous to the hundreds of desktop publishing tools that became available in its early years: examples of what can be done when data gets free, not all of which should be done, or even has any reason to get done.

But that’s the whole point: when information gets loose, innovators all over creation get to try things – at their own risk, with their own investment – and we-all out here get to make up our own minds about which of it is worth anything. The world shifts. As I’ve often said, “To innovators, data is fuel.” And I’ll never forget Todd Park (the US Chief Technical Officer) shouting from the stage, “Data Liberación!”

Also quoted in the bigger article are my respected colleagues Susannah Fox and Wendy Sue Swanson MD. Fox is widely felt in healthcare circles to be the wisest observer of what you and I actually do online (a debunker of many myths, with facts and heart), and Seattle pediatrician Swanson is almost legendary for her sober, reality-based, compassionate advice to parents in today’s ever-changing world.

Also cited is Dr. Eric Topol, who wrote the introduction to Let Patients Help, which I co-authored with Dr. Sands, and which is now in 7 languages (and a Chinese company just bought the rights). I’ve just finished reading Eric’s new book The Patient Will See You Now, which goes very very deep and wide into these articles’ topics. I hope to review it soon.

More later on why these realistic articles are important at this moment in time. Because just as with the rise of desktop publishing, and just as with Topol’s book, not everyone is happy with the coming change.