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.
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 OpenAPS.org. 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.
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, bcsm.org. 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.
- 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:
- 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.
- 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.
When a patient receives a diagnosis of cancer it is life changing. Even after treatment and assurance that you are in remission, the cancer threat is never far away. Every time you go for a screening, the fear returns to haunt that maybe this time they will find additional tumors or cells that are not normal.
According to the World Health Organization (WHO), 8.2 million people die each year from cancer, an estimated 13% of all deaths worldwide. Most alarming regarding cancer is that it is expected there will be a 70% increase in new cases of cancer over the next decade, spread across more than 100 cancer types that exist, each requiring a unique diagnosis and treatment.It is that unique cancer diagnosis and treatment that was front and center at last week’s World Medical Innovation Forum, sponsored by Partners Healthcare in Boston, MA.
Guest post by SPM member Liz Salmi of CCCC, an organizational member and supporter of our Society for Participatory Medicine. Note also (at bottom) that this event provides a model for other organizations to follow: patient participation is enabled by a foundation grant.
In our society, talking about serious illness and death and dying is often difficult. Having these discussions is not a common experience for most of us for numerous and complex reasons. It’s hard to talk about death and dying when it is generally a culturally taboo topic.
Knowing that there are options towards the end of life, such as palliative care and hospice, may help make these conversations easier.
For the first time, the Coalition for Compassionate Care of California [an organizational member of our Society] is excited to welcome e-patients to participate as equal partners in our 8th Annual Palliative Care Summit on May 12-13, 2016, in Newport Beach, CA. The Summit will be keynoted by e-Patient Dave.
Quick summary for the impatient: Michael’s post urges public comment in the upcoming comment period, and ends with this: “If we in the patient community do not raise questions and objections to this critically important MACRA rule, you will definitely not believe what happens next.” – e-Patient Dave
Sure, I’ve always wanted to write a clickbait headline that sounds like a promo for the bastard child of Buzzfeed and the Federal Register. But, seriously: you will not believe what Medicare just did about patient engagement in a draft new rule dramatically changing how doctors are paid.
And, depending upon the reaction of the patient community, you definitely won’t believe what happens next.
Next in our #DocTom10 series, which started here. If you haven’t read about Tom’s preface, and the Foreword by Pew Research, we urge you to. Remember, this was all written a decade ago. Today, Tom’s introduction. Please discuss!
The key question we must ask is not
what technology will be like
in the future, but rather,
what we will be like…
I collect old toy robots. My Atomic Robot Man robot (Japan, 1948), shown [here], is a personal favorite. For many years I didn’t understand the powerful hold these dented little metal men maintained on my imagination. One day I finally got it: They show us how the culture of the 40s and 50s imagined the future. Cast-metal humanoid automatons would do the work previously supplied by human labor.
We’ve often written here about palliative care and end of life. (The two are not the same: you can have palliative care without having decided the end is near.) They’re, in a sense, the ultimate expression of patient-centered care, forcing the question: who gets to say what’s the right thing to do?
One of SPM’s newest members is Dr. Jessica Zitter (@JessicaZitter), author (right) of a post last week on the New York Times “Well” blog, with a recent story of a patient who was clearly dying. It ends:
I believe we did right by our patient. We acknowledged that we couldn’t save her, and resisted the urge to treat her untreatable disease — and instead treated her suffering.
The photo shows Dr. Zitter in a short new documentary on the subject produced by Netflix, “Extremis,” that’s being featured at Robert DeNiro’s Tribeca film festival, underway now.
Next in our #DocTom10 series, which started here. Today we resume our review of the chapters of Tom’s White Paper.
This Foreword stands on its own, with no comment needed, so we’ll just paste it in verbatim.
Note: these numbers are from 2000, when the Web was just six years old! E-patients have been e–patients a lot longer than skeptics believe.
By Lee Rainie and Susannah Fox
The Pew Internet & American Life Project
It gives us great pleasure to recommend this white paper—and its author—to everyone interested in understanding how our first generation of e-patients is slowly but surely transforming our healthcare system. For we have learned a great deal about the emerging e-patient revolution from its author, Tom Ferguson, and from his team of expert advisors and reviewers.