e-Patient Dave

Power to the Patient!

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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.

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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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New BMJ article: “From patient centred to people powered: autonomy on the rise”

Screen capture of the article on the BMJ site

I’m thrilled to say that the BMJ, formerly the British Medical Journal, has just released a new article I wrote about the “social movement” aspect of our work, including the rationale for listening to the patient perspective.

Intended for medical audiences around the world, it’s part of a big, 21-article multimedia “Spotlight” supplement that will be in Thursday’s print edition; it was all released online yesterday. Over on the e-patient blog I posted the full list of articles, including the names of other members of our Society for Participatory Medicine who are in this issue. Big participation, big visibility!

This supplement, appearing in one of the world’s top medical journals, may well be the biggest moment yet in the history of our movement. It’s got hours of reading and listening, with contributions from eight countries, if I counted correctly.

Those of you in my generation – the era of many social movements – will relate to the parallels with what’s happening today: a whole class of people whose voice has been considered “not worthy” is speaking up, demonstrating capability, and pushing back when we’re told to “stay in our place.” :-)

Is it time for a new scientific field?

[Read more…]

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Opening the ICU doors to family: report from Virginia Mason

Screen capture of article top
Click to view article PDF (open access)

On Twitter tonight I learned from Dr. Sachin Jain of a November article that should be of interest to all of us who want to work toward full patient and family engagement in all aspects of medicine. To be sure, the changes we’d like are not always simple, and one example is expanding family access to the ICU.

Virginia Mason Medical Center (VMMC) is widely known for being far far more patient-centered and quality-oriented than most medical institutions – including, in this case, even the really challenging parts.  I hope I don’t get in copyright trouble for pasting too much in here, but the whole article is Open Access (no charge) so have a look, under the heading “Problem: Despite tradition, genuine need to open doors”:

Over time we became more aware that this traditional model was badly disconnected from the needs of our patients. The Institute of Medicine emphasized that families serve as a healing influence by providing comfort, connectedness, energy, self-esteem and wisdom; there is little or no evidence to indicate that the practice of family member presence is detrimental to the patient, the family or the health care team. Indeed family member presence during invasive procedures or resuscitation should be offered as an option to appropriate family members.

[Read more…]

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“A union of forces between providers and patients”: Mayo chiefs name a patient as 2015 Visiting Professor

Boy, is this a thrill: the Chief Residents at the Mayo Clinic have invited me to be their Visiting Professor in Internal Medicine next March.

A patient. As Visiting Professor.  Is that a sign of the changing times?? The announcement is being made today, during the patient panel at Mayo’s sixth annual social media summit. Here’s their post, including a four minute video interview.

Here’s their press release – their words – then I’ll discuss below.


“A union of forces between providers and patients”:
Mayo chiefs name a patient as 2015 Visiting Professor

[Read more…]

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How early should patient voices be heard in the research process?

Timeline graphic - when to involve patients?
Click to enlarge. Graphic by Bettina Ryll, MD/PhD, Melanoma Patient Network Europe (MPNE) in EORTC patient course 2014

I’m in Madrid at the ESMO Congress, “the European ASCO.” (ESMO is the European Society for Medical Oncology; ASCO is the American Society of Clinical Oncology, and its annual conference is huge, as is ESMO’s – over 18,000 attendees.)

Yesterday I led a session titled Meaningful patient involvement in clinical trial endpoints, and a couple of slides stopped me in my tracks. (If you don’t know the term “endpoints,” see discussion below. In short, it’s what they decide to measure, to see if a treatment is effective.)

The first slide here (click it to enlarge) points out a disconnect: the yellow triangle shows that today, patients are mostly involved toward the end of the process – after someone has decided what should be studied, and designed a trial to do that. At bottom right, in the blue band, we see that in this model the patient’s role is “doing things right.”

But the creator of this slide is German doctor Bettina Ryll (living in Sweden), whose husband died of malignant melanoma. [Read more…]