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 e-patients.net 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.
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.
As 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):
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.