Most Recent

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…

Comment Now

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.

read more…


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.

read more…

1 Comment

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).

read more…

Comment Now

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 :-)

read more…

Comment Now

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…

Comment Now

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).

read more…

Comment Now

Meet Donna Cryer, new co-chair of SPM

Donna Cryer from The AtlanticAt 10 ET today (Feb 25) Donna will be a guest at the White House Precision Medicine Initiative, with several other members of our Society. Watch it on livestream. See also our post on the PMI event a year ago by then-president Nick Dawson.

I’m thrilled to announce that after seven years as founding co-chair of the Society for Participatory Medicine, I’m transitioning to a new role as Chair Emeritus, so that Donna Cryer JD can become the new Patient Co-Chair.

Donna is astounding. See her bio on our society’s website: she’s an accomplished attorney, health policy advocate in Washington, and seriously experienced patient: not just one medical adventure, but IBD plus a liver transplant plus (this past year) bilateral knee replacement. She, like me, is a lifetime member of our Society; she joined the board last year.

read more…


Join the #ScopeScope, March 1, to help Fight Colorectal Cancer

Lee Aase photo

Lee Aase (external view)

This is a hoot. I say this as someone who first blogged in 2008 about this process.

On Tuesday March 1, Mayo Clinic will be streaming video of a colonoscopy, live on Periscope, in a broadcast they’re calling The #ScopeScope.

Lee Aase, head of the Mayo Clinic Social Media Network, has volunteered to be the patient. Yes, he’s going to Periscope his ‘scope. #ScopeScope!

Here’s his blog post about it. The publicity, and the “strong-arm” YouTube, is all about getting people to stop worrying about colonoscopies (it’s really not an obnoxious experience) … for better health.

read more…


Participatory Medicine: An Administrator’s Point of View

Mark ReifsteckGuest post by Mark Reifsteck [left], who joined our Society in 2014. Follow him on Twitter at @MarkWReifsteck. To become a member, individually or organizationally, see our Join Us page.

It started innocently enough: I made an off-handed comment on the SPM member listserv about tone-deaf (my term) administration of a healthcare institution, which prompted a friendly exchange that resulted in a challenge to me to write something about how healthcare administrators can promote participatory medicine in their organizations.

Which got me thinking.

I have been in senior executive roles in hospitals and health systems for more than 30 years, I am not clinically trained; rather came up through a traditional healthcare administration program that trained primarily, though not exclusively, non-clinical folks like me.

read more…

Comment Now