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Sara Riggare: “The new kind of patients challenge healthcare”

Sara Riggare newspaper front pageSPM member Sara Riggare is a PhD student at Karolinska Institutet in Stockholm and a member of the BMJ’s Patient Advisory Panel. She has Parkinson Disease, and is highly proactive in dealing with it. One thing some Parkinson patients do is non-contact boxing, e.g. the Rock Steady program, and Sara has often posted pictures and videos on Facebook of herself doing it.

Well, appearances can be manipulated :-). Last week she was on the front page of, she says, “a special issue on healthcare digitalization published by a Swedish weekly newspaper called Today’s society. The headline says ‘The new kind of patients challenge healthcare.'”

Ain’t THAT the truth. :)

The text inside (according to Google Translate, anyway) says:
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National Doctors’ Day, clinicians, hacking open access, and remembering an e-patient

National Doctors' day cardSomehow I’d never heard of National Doctors’ Day, but apparently it started 25 years ago, in 1991. As one of many SPM members whose life was saved (or is being helped) by excellent physicians, I’m in!

And I want to shine a broader spotlight on the wider class called clinicians (Wikipedia): all sorts of medical professionals who work directly with patients, including nurse practitioners, nurses, aides … see that Wikipedia link for a list of many types.

A side note: this particular “Twitter card” was taken from a tweet by the American College of Radiologists. That’s the group we wrote about last week, who’s sponsoring a “hackathon for open access” to medical journals. That subject – figuring out how to help all of us harvest the most clinical value from research – will be a key enabler of full patient-clinician partnerships.

Judy with nephew Zack, from her "Patient Wisdom" blog, November 2007

Judy with nephew Zack, from her “Patient Wisdom” blog, November 2007

Speaking of those full relationships, I’ll close with a special note of thanks to the many researchers who generously share their work in process with e-patients. For some reason lately I’ve been thinking about – and talking about, in speeches – e-patient Judy Feder, a metastatic breast cancer patient who prolonged her life 18 months thanks to the four e-patient communities she belonged to. On BCMets she learned about a new blood test that got her access to an unusual use of Herceptin. That story is in our post a year later about her demise.

For her, the extraordinary value of achieving the best in medicine was that she and the next generation of her family got to spend a precious extra 18 months together.

Here’s to the best of medicine; no, here’s to the best of health. It works best when patients and clinicians each contribute their utmost – participatory medicine. So Happy Doctor’s Day!

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How I became an e-patient: through practice, with coaching (using Lean on the patient side)

Tyson OrtizThe next in our series of “How I became an e-patient” posts. Tyson Ortiz joined a few months ago, having been introduced to us by fellow Lean practitioner Mark Graban. His story weaves together two concurrent threads: learning about a new aspect of Lean, and the arrival in his life of an urgent need for excellence – a newborn son with a serious medical challenge. The outcome is inspiring.

Like many others, I became an e-patient in response to a loved one receiving a terrible diagnosis. In the summer of 2012, my wife was 20 weeks pregnant when we learned that our son would be born with half a heart. This condition made his chances of living to see kindergarten roughly a coin flip.

Perhaps unlike others, for me becoming an e-patient was more of a process than a sudden event. At the time, my personal history was better characterized by shrinking from challenges than rising to meet them. I didn’t really bring to the table the investigative skills or purposeful drive that an e-patient needs to be successful. In all likelihood I would have followed the traditional path of simply deferring to the experts if not for a fortunate coincidence in my professional life.

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Curiosity Got These Cats Their Health Data – from GetMyHealthData

Our friends over at GetMyHealthData have put up a terrific post breaking down exactly how/why all people can access their health data. Get YOUR data – it’s yours! Here’s the whole GIF-rich party.

Cats have nine lives to figure out how to get their health data, but you don’t have that kind of time.  Here are 9 facts about digital health records from the curious cats that lived to tell the tale (or tail!).

1. Paper, printers, faxes…things of the past. Get your health data electronically!

Sure, you could get your paper record.  But who needs stacks of paper when you have the right under HIPAA to digital copies of your health record?  read more…

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A hackathon for Open Access?? Check it out!

Cartoon from 2014 by @HildaBast, Chief Editor of PubMed Health & PubMed Commons

Cartoon from 2014 by @HildaBast, Chief Editor of PubMed Health & PubMed Commons

We’ve often written here about open access medical literature (freely available) vs “paywalled” journals. It’s a controversial subject, and this guest post is about an idea I’ve never heard of: a hackathon to explore the subject. (In the cartoon, “impact factor” refers to another controversial subject: how impressive science considers a journal to be.) Here’s the story; event info is at the end. It’s by Andrea Borondy Kitts, who will be one of the judges.

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Don Berwick wants healthcare to take it to the limit, with Patients as Peers

Decades ago, there began a rigorous effort to tackle health care problems by focusing on science, improvement and measurement. A prominent driver of all things related to practice betterment has been The Institute of Healthcare Improvement, or IHI. Led by pediatrician Don Berwick and colleagues, IHI’s siren song has been “Plan, Do, Study and Act” to seek out and resolve practice variation, poor performers, and waste. They promulgate the Triple Aim, and have annual conferences where one of many highlights is Berwick’s annual address.

The IHI website says: Although the problems are big and daunting, we resolve to approach them with optimism grounded in rigorous science, hard work, and a relentless drive for results.

And now, a pivot of importance. Don Berwick, also formerly head of the Centers for Medicare and Medicaid Services, says it’s time for a new Era in Medicine. In his keynote at the December 2015 IHI Forum, he noted a wide gap between what health care is and should be. His views were just published in JAMA, Era 3 for Medicine and Healthcare.

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Pharma TV ads: Film at 11

epharma panel

Casey, Randi, Julie, Jack

SPM members Randi Oster of Help Me Health and Casey Quinlan of Mighty Casey Media made up two thirds of a three woman panel, “Patient Leaders Want To Kill Pharma TV Ads, Right Now,” at the 2016 ePharma Summit in New York last week (February 29 through March 2). This was the first time a group of patient influencers had been invited to present at the annual ePharma Summit.

The panel was assembled by Jack Barrette of WEGO Health, who served as chairman for the event. The goal: to convince attendees that patient influencers can be their allies in taking budget dollars away from BAD TV ads (which confuse consumers and damage pharma companies’ reputations) to use it for GOOD digital programs (like patient leader advisory boards, real patient education, peer-to-peer support, and longer-form communication).

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SPM survey results at HIMSS: “Patients want to be involved with their health information”

It’s time again for the gigantic (50,000 people) HIMSS trade show – the Health Information Management Systems Society, in Las Vegas this year. These new SPM slides (on Slideshare) will be shown in the Consumer Engagement zone, summarizing our two surveys on what patients want:

The following is an editorial – my opinion, not a resolution passed by the board :-)

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The Precision Medicine Initiative, Patients’ Health Data Rights and You

0005The recent Precision Medicine Initiative Summit at the White House saw dozens of private entities committing to join with the administration in supercharging the effort to enroll one million patients into precision medicine research programs, collecting and securely sharing data about them – including genomic data – all in an effort to crack the code of intransigent medical conditions and provide answers and therapies in a “precision” manner, looking for solutions that serve each patient best. (Also referred to as the N of 1 approach.) NIH is on the Precision Medicine bus as well. A number of SPM leaders and members were present, too.

President Obama took part in the proceedings (see White House video in this post) and in addressing the reach of the initiative, he noted that “precision medicine … is … empowering individuals to monitor and take a more active role in their own health.” This was a striking statement, and it has a number of implications. For our present purposes, the key issue thus raised by the President is that of the inextricable link between precision medicine, information access and participatory medicine. read more…

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Why I joined SPM – and why maybe you should!

John HobenGuest post by John Hoben, who joined our Society in 2014 and has been a major contributor to discussions on our member listserv. He recently joined our board of directors. He has a particularly great story – he actually met Doc Tom long ago! – and I asked him to capture it here for our occasional Why I Joined SPM series.

In July 1995, Faulkner & Gray Publishing (now Thomson Reuters) asked me to edit and co-author a new annual series on health care resources and the Internet.  This invitation led me to attend The Annenberg Retreat at Sunnylands where I met “Doc Tom” Ferguson, whose followers, after his untimely death in 2006, founded our Society for Participatory Medicine (S4PM or SPM).

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