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A landmark day in the movement: Patients in the Front Row

2015-01-30 11.18.59

Photo by Nick Dawson on Flickr


Last Friday, 200 patients, advocates, scientists, doctors and researchers gathered at the White House to hear President Obama’s launch of the Precision Medicine Initiative. According to the President, precision medicine aims to tailor treatments to each individual. President Obama likened precision medicine to how we match blood transfusions to blood type – only now we should aim to match a wide range of treatments to a wide range of varying genetic and biounique markers.

The initiative begins with a budget request for $215 Million in new funds. The funds will be used, mainly at the NIH, to:

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The movement gets real: one of Doc Tom’s sightings gets $28 million with Iora Health

Iora Health logoThere are times in a movement when value is revealed and recognized, and you know something real is happening. In the engaged-patient movement, the first I noticed was when Amy Tenderich’s Diabetes Mine blog (and its community) was acquired several years ago. That takes it from what some people might view as “clubby” to tangible significance. (Oh, and they just got picked up again (amid a flurry of press releases) by Healthline.)

Rushika at Wired health conf Nov 2013This post is going to be pretty enthusiastic so I’ll say at the start that I have no connection with Iora Health. I believe in what they’re doing, but that’s all – I’ve never visited or even talked to them, though I’ve met CEO Rushika Fernandopulle (left).

I first read about him, seven years ago this week, for what he was doing back then.

Twenty years ago the founder of our movement, “Doc Tom” Ferguson, predicted that the internet would turn healthcare on its head: see Steal These Slides, which cites CNN as calling Tom “the George Washington of patient empowerment.” He then started spotting various people doing things differently because of the internet, including SPM founders Gilles Frydman, Alan & Cheryl Greene of, Dr. Danny Sands, Joe & Terry Graedon of, etc.

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From OpenNotes to OurNotes: New project heads toward *real* participatory medicine

OpenNotes logoI’m beyond thrilled. Way beyond thrilled. This is going to take some figuring out, but is this what we’ve been striving toward, or what??

For years we’ve written here about the OpenNotes study (, funded by the Robert Wood Johnson Foundation, which established that when patients can read their doctors’ unedited visit notes – the hairy detailed medicalese – the world does not fall apart, the sky does not fall; to the contrary, things overall work better and patients like it so much that 85% said from now on access to their notes would be a factor in their choice of provider!  (For full study results see here.)

Today over five million patients have access to their notes, at such world-class institutions as M.D. Anderson, Geisinger, Kaiser Permanente, and many more. (See the list here.)
Commonwealth Fund logo

Well, yesterday a big next step was announced:

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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)

Cross-posted from my personal blog yesterday

On Twitter Friday night 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.

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CHCF’s iHealthBeat podcast on online communities

One of the California Health Care Foundation’s regular projects is iHealthBeat, “Reporting technology’s impact on healthcare.” Wednesday they released a five minute podcast on patient communities, which are of course a core activity of engaged patients and thus of participatory medicine. I was interviewed for it, as was the highly participatory Dr. Eric Topol, author of the new book The Patient Will See You Now. What I didn’t know is that my own doctor (and SPM co-chair) Danny Sands is also in it! (Good thing our statements didn’t conflict…)

Screen capture of the podcast page

Here’s the podcast page, and here’s a snip describing the participants:

  • Dave deBronkart, a patient with kidney cancer who learned about a life-saving drug through an online patient community;
  • Sherry Franklin, a pediatric endocrinologist in Encinitas, Calif.;
  • Danny Sands, a primary care doctor and professor at Harvard Medical School; and
  • Eric Topol, a cardiologist and the director of the Scripps Translational Science Institute (Goldberg, iHealthBeat, 1/14).


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Patient Generated Health Data webinar featuring SPM members

HDC logoThe Health Data Consortium, the folks who bring Health Datapalooza to life in DC every year, have increased the input of the Consumer Circle ahead of this year’s event, which is on the calendar for May 29 thru June 3 at the Marriott Wardman Park in Washington DC.

As part of that commitment to increasing the consumer/patient voice in the ongoing health data policy discussion, HDC is offering a webinar on Wednesday, January 21, 1pm-2pm Eastern Time, titled Patient Generated Health Data: An Overview.

The webinar panelists are:

  • Mandi Bishop, Health Plan Analytics Innovation Practice Lead, Dell (health data super-geek who’s been working on interop her entire career)
  • Greg Meyer, Principal Architect, Cerner Corporation (data system architect with his heart, and his thinking, focused on better data access for patients)
  • Dr. Danny Sands, Chief Medical Officer, Conversa Health (one of the founders of SPM, and a constant voice for “gimme my damn data”)
  • Scott Strange, Diabetes Advocate (SPM member and MedX ePatient Scholar who’s a widely read ‘betes blogger)

Here’s the overview of what’s on tap:

The information patients and their family caregivers provide about their preferences, values, and abilities – in addition to data generated from wearable or monitoring devices – complements clinical information generated by care teams to provide a comprehensive, person-centered view of an individual’s health. Use of both clinical and patient generated data is a more effective approach for engaging patients and their caregivers, ensuring that care results in better outcomes, and decreasing costs associated with unnecessary readmissions and difficulties with adherence. Learn more about Patient Generated Health Data, when and how to collect it, and how to share it at this webinar organized by the Health Data Consortium’s Consumers’ Circle.

Register to attend the webinar by clicking this link – if you can’t join live, registering for it will give you access to the recording post-event.

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For the #MedX “year of doing”: “Don’t be a nail”

Medicine X "Year of doing" graphicOur movement seems to be entering a turning point, and today Paul Levy’s blog had a great example.

The change is embodied by the 2015 theme of our e-patient conference buddies at Medicine X: “This is the year of doing.” In my view this means two things: bringing it from concepts into specific actions everyone should do, and bringing it to the grass roots – the people you meet in the supermarket.

(Note: the MedX logo shown here is not related to Paul’s post – they’re two separate examples of this shift, neither of which is formally connected to SPM – but maybe we should be! The point of this post is that our great big “school of fish” seems to be making a big right turn.)

Paul’s post today is a great example of how an empowered / thinking e-patient thinks and acts, as opposed to what an unthinking patient would do. In Don’t be a nail just because your doctor’s a hammer, he shares a friend’s story. Quick excerpt:

  • Toddler was “failing to thrive.”
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Great Marie Ennis-O’Connor infographic on live-tweeting an event

E-patients know that social media can be a potent tool for spreading the movement, spreading the message, and connecting with others. Some of us are better at it than others; if you’re looking for someone to follow who does it well, try SPM member and Medicine-X ePatient Scholar Marie Ennis-O’Connorbio, Twitter @JBBC, website Journeying Beyond Breast Cancer, and column Beyond The Buzz: HealthCare Social Media at Health Works Collective. (See what happens when a PR professional” meets “cancer patient”?)

Marie came to mind just now for this great poster (“infographic”) created by Tim France @FranceTim of @iniscom and Tom Fowler @GlobalHealthTom about using Twitter at events. To visit her original post on the Healthcare Social Media site, click the graphic.

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Hot Trends in Health Care for 2015


Over 90% of the world’s population has some type of mobile phone, according to reports from the ITU (International Telecommunications Union and PEW research. mHealth will continue to be a major factor in technology and health in 2015, with new apps that connect patients to physicians for real-time monitoring of heart rate, pulse, blood pressure and blood sugar, weight, body temperature, asthma, and more. Most of these apps either cost under $5.00 or are free.  There will be expanded use of SMS (Short Message Systems) to send health information tips and reminders to patients throughout the world.


By far, among the most compelling innovations in 2015 will be the increased use of wearable technology — devices and clothing embedded with sensors that can track an individual’s activity, sleep, heart rate, pulse, blood pressure, weight, and more. From headsets that measure brainwaves to t-shirts, hats, smart shoes and socks, and special glasses, personal health monitoring has come of age. In 2014, the most popular wearables were the fitness trackers, including the popular FitBit.

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Consumer Reports: “Respectful” treatment key to patient safety?

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image: Consumer Reports

In a report released today (December 16, 2014), Consumer Reports shares insights from a survey of 1,200 people who were recently hospitalized. SPM is not surprised by the findings, which include the fact that patients who said they received respectful treatment by hospital clinicians reported fewer medical errors and better experiences in their hospital stays.

This could be a landmark that helps to shift the paradigm on hospital safety and medical errors, given that Consumer Reports is read by a much more diverse audience than is JAMA or NEJM or BMJ. Getting information on how to manage a hospital stay in front of patients and families *before* they get hospital treatment – information that isn’t just a procedure brochure from their surgeon, as helpful as that can be about the reason for the hospital stay – is critical to increasing patient safety.

One message that comes through loud and clear: engagement may be the buzzword, but accountability is the watchword, for both clinical teams and patients. We all have to participate. Which we can only do if we’re fully informed.

Reading through the report online, which we encourage everyone to do, serves up these key points:

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