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OpenNotes on stage at live Washington Post event

Tuesday morning in Washington, the Post hosted a 2-1/2 hour event on improving healthcare, with numerous speakers on several topics. Of special interest to SPM is this 26 minute segment that includes OpenNotes, which we’ve often written about. OpenNotes director Tom Delbanco is one of the three speakers. He describes the historic origin of OpenNotes and has updates on how it’s going – not perfect (four doctors have withdrawn, nationally) but overwhelmingly positive. He always likens it to “a new medicine,” with benefits and side effects.

But note, too, the other panelists’ repeated mention of “gag orders” that have been placed on doctors, forbidding them to speak out about specifically how badly their EMR systems suck. (That’s the word I’ve often heard doctors use.)

And around 26 minutes, Delbanco cites SPM board member-at-large Dr. Peter Elias, who was basically doing OpenNotes before it had a name. (When Peter and I first met at an event in Maine, he also said he’s been doing participatory medicine since long before it had a name, too.)

This video will be of use if you ever want to give someone a quick introduction to OpenNotes.


Has your doctor ever talked to you like this Oliver Wendell Holmes quote?

A large part of our work here at the Society for Participatory Medicine is about changing culture of healthcare. In such times, I’d useful to look at our roots. Here’s an attitude tidbit from 1871 that our friends at the BMJ published sixteen years ago.

"Your patient has no more right to all the truth you know than he has to all the medicine in your saddlebags …. He should get only just so much as is good for him"

“Your patient has no more right to all the truth you know than he has to all the medicine in your saddlebags …. He should get only just so much as is good for him”


“FOUL,” you say – “That was 145 years ago!” Well, a friend says that in 1980 a doctor was feeling around on her neck and, being a curious e-patient type, she asked what he was doing. “It’s none of your business what I’m doing,” he said.

And last year on Twitter someone (I forget who) said she’d introduced herself to a new doctor, saying “I have idiopathic [something],” and the new doctor snapped: “Where’d you get that word??”

(The great irony is that “idiopathic” is a fancy Greek-based word for “We wise docs have no freakin’ idea why this is happening.”)

Do you have a culture problem in your medical life?  Have you experienced that treatment?  Please share… including how recently it happened!


Eric Dishman’s transformational speech on his last day at Intel: “Knowledge is survival”

I’ve known Eric Dishman for about five years, because we’re both kidney cancer patients. I’ve known that he’s a really sharp thinker, and a high-ranking executive at Intel, deeply interested in and involved in their work in healthcare.

May 3 was his last day at Intel, and he gave what may be the most mind-expanding reality-popping speech I’ve heard, and I’ve heard a thousand. (Really, I was fixated, and at one point my jaw dropped.)

Where’s he going from Intel? He’s going to head up the “million person cohort” project at the National Institutes of Health. An Intel guy heading up a huge NIH project?? When you listen you’ll hear why.

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Just Say “No” to Medicare’s MACRA Tokenism

On social media and at meetings like Health Datapalooza, our favorite federal bureaucrats assure us of their commitment to open data and patient empowerment. But those are just soothing words; federal regulations are law.

On April 30, I posted on an article entitled, “You Won’t Believe What Medicare Just Did on Patient Engagement!” In it, I showed how the long-awaited draft regulations for the implementation of the Medicare and CHIP Reconciliation Act (MACRA) were extraordinarily weak in the requirements related to using electronic health records for patient engagement. I concluded the post by pointing out that the comment period on the draft rule ­ – that is, the formal opportunity to influence the final rule – ends June 27. Just to be reinforce the importance of commenting, the physician reimbursement rules Medicare is setting forth in MACRA will play a major role in the U.S. health care system’s transformation from fee-for-service to value-based payment.

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Fighting Cybercrime: One Hacker at a Time

Computer Crime is the misuse of a computer or associated electronic networking system in order to commit illegal and unlawful acts. Computer crimes range from the illegal use of the internet to the unlawful accessing of information stored in computer systems.  In 1984, my husband Peter Finn, who is an attorney, and I wrote an article for Computerworld, a technology publication, entitled “Don’t Rely on the Law to Stop Computer Crime”. That title is equally relevant today.

In the article, we discussed the case of New York v. Weg which illustrated how difficult. computer crime statutes can be to uphold.  A Judge in the New York Superior Court dismissed the theft of services charge against a computer system manager employed by the New York Board of Education who used school computers to trace the genealogy of horses and create a handicap system for betting. The Court found that the individual had not committed a criminal act because the school system had given him general cyber access to the computer.  However, if he had plugged into a public computer system without permission his acts may have constituted a criminal offense.

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OpenNotes study in BMJ Quality & Safety finds patient-doctor “relational benefits”

BMJQS OpenNotes headlineAs regular readers know, we’ve written many times about OpenNotes, the project funded by Robert Wood Johnson that blew the doors off of beliefs that bad things happen when patients see their charts. (We blogged about the original results in 2012.)

Now a new study in BMJ Quality & Safety adds the results of a follow-up survey examining the effects of OpenNotes on the patient-clinician relationship. Excerpts from the abstract (in British English spelling):
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#OpenAPS is bearing big fruit, part 2: Quantified Self presentation in San Diego

A truly significant moment in the history of medicine happened last Wednesday. I say that after attending almost 500 conferences and policy meetings in the past seven years, and I don’t say it lightly. Something many people think is impossible was presented live on stage: patients, informed and empowered by access to their data and access to tools, are successfully managing a complex and dangerous condition – Type 1 diabetes – on their own.

Most of them will someday welcome the participation of clinicians, researchers, and industry, but their hashtag is: #WeAreNotWaiting. 
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#OpenAPS is bearing big fruit, part 1: Dana Lewis’s speech at O’Reilly’s OSCON

Dana Lewis on stage at O'Reilly

Click image to watch video on the O’Reilly site

For some reason we haven’t written much about this here – our only post is from SPM Past President Nick Dawson 15 months ago – but this is such a big deal. Here’s an 11 minute introductory video on this – I won’t say more, I’ll just ask you to click and watch this.

The speaker is @DanaMLewis, who lives with Type 1 diabetes, and has hacked into her CGM (continuous glucose monitor) and her insulin pump and grabbed the data feeds in the devices. Then, using a $35 computer called the Raspberry Pi, she and then-boyfriend @ScottLeibrand (now husband) wrote software to manage her blood sugar better than it’s ever been controlled before.

It works. They call it the Automated Pancreas System, and they donated the code to open source, at And now scores of people are doing it.

As you’ll hear, this is threatening to everyone who believes that patients can’t understand all the complex things needed to manage a disease like this … but as you’ll also hear, it’s profoundly liberating to the people who have the problem.

The event was an open source software conference, so some of the language is technical, but you can just skip over that – the main point is all in plain English.

This week in San Diego, at the Quantified Self Public Health Symposium, six members of our Society for Participatory Medicine saw Dana lead a 45 minute session with eight other users on stage. It was beyond amazing, because everything they said was scientifically rigorous – an irrefutable display of evidence that unimaginable things are actually happening, with all power in these patients’ hands. Another post with video of that event will come shortly.

If you haven’t heard of this and want to catch up, do some googling, and check these hashtags: #WeAreNotWaiting, #OpenAPS, #NightScout. More in a day or two.


Jody Schoger, co-founder of #BCSM breast cancer community, has passed

BCSM founders Dr. Deanna Attai, Alicia Staley, Jody Schoger

BCSM founders Dr. Deanna Attai, Alicia Staley, Jody Schoger

We lost a great one today.

Jody Schoger @JodyMS was one of the founders of #BCSM (breast cancer social media), the first patient community that started on Twitter and grew into a 501(c)(3) organization, She passed on this morning, and Twitter is in tears.

Nothing we could say here could come close to the beautiful homage penned by her co-founder Alicia Staley (@Stales) on the BCSM blog, Good Night, Jody, a play on their favorite signoff from the children’s book “Good night, moon.”

Good night, Jody. You will be missed.


Patient solves difficult diagnosis using … an online image sharing service??

Dr Danny Sands tweet about Imgur diagnosisThe times, they are a-changin’: medicine is realizing there can be gold found on the internet, amid all the garbage that’s also there. Items:

  • In 2014 a European government started buying Google Ads telling patients “Don’t Google it, check a reliable source.” Why is that an either-or?? Smart e-patients do both! This is a good use of taxpayer money??
  • In 2015 there was a big (and much deserved) reaction against the coffee mug that said “Don’t confuse your Google search with my medical degree.” Our blog post about it produced numerous stories of activated e-patients adding to – or sometimes correcting – what their clinicians were doing, including some saved lives.
  • Last year a big Israeli HMO joined the fray, producing a commercial similar to the Belgian one – they diagnosed a patient in a wheelchair as a “search victim.”

There are two major e-patient / participatory medicine lessons here, which we need to spread:

  1. It’s wrong – demonstrably wrong – to expect every clinician to know everything. This was a key finding in Doc Tom Ferguson’s e-patient white paper ten years ago.
  2. It is possible to use the internet to improve outcomes.

On Saturday, SPM co-chair Dr. Danny Sands (my doctor!:-)) tweeted a great counter-example: a woman with a difficult diagnosis who posted pictures on the online image sharing service Imgur. Last I checked, Imgur isn’t licensed to practice medicine, but amazingly, its reach let her connect with countless others across vast distances, and, happily, she found an answer.

The Society for Participatory Medicine works to develop the thinking and spread the word about patient-clinician partnerships. Information on joining, individual or corporate, is on our Join Us page.

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