Updated Sept. 6: I’d forgotten that as we posted in June, Cleveland Clinic announced open access too, adding a half million patients to the total.
Big news is emerging from the OpenNotes® project: big institutions are making patient access to the medical record Standard Operating Procedure.
For the first time, an unprecedented number of patients and families – over
1.3 million 1.8 million so far – are enabled to take a big step toward full partnership in their care, by having access to the information their clinicians wrote. And there’s more on the way in the next year.
This is great news for participatory medicine! We’ve often touted here the news from the OpenNotes study. If you’re new to it, here’s our post announcing the results last fall, and here’s the project’s website. The results were big news for participatory medicine because they said that when patients can see their doctors’ visit notes – unedited – things go better. That’s important, because as SPM co-founder Dr. Danny Sands says, “How can patients participate if they can’t see what I see?”
The OpenNotes study was limited to letting us see the visit notes written by our primary physicians, but the participating medical centers (and others) heard the message loud and clear, and they’re going LARGE on it.
Added 9/6: In addition to Cleveland Clinic, these providers are on board:
1. Study participant Geisinger Medical Center has opened visit notes to over 100,000 patients.
From the OpenNotes project site:
There’s a new index in town. This week’s entrant is the EveryMove 100, a ranking of health plans across the US “based on how they engage with and empower consumers to manage their own health.” according to the presser. (EveryMove is a health rewards based marketing and incentives company that provides opportunities to consumers to earn benefits by engaging in healthy behaviors.)
Consumer engagement and empowerment in the health care sphere are a good thing, so I asked EveryMove CEO Russell Benaroya for a little more information on these rankings, as the website was short on detail. He filled me on on the initial metrics, and suggested that the metrics will be revisited on a quarterly basis by the team and advisory board (which at present includes Matthew Holt, Aman Bhandari and Garrison Bliss).
A few months ago, I complained about the layout of one of my doctor’s offices. There’s a rough layout drawing of the office waiting area to the side there. I’m standing just in front of the number 1, while people are sitting along the wall behind me.
Do you see the problem?
After I identify myself with both my date of birth (Seriously, this is the first thing the “medical secretary” asks you for when you walk in — already setting the tone for the visit — you’re just a number to them) and then my name, I have to discuss the reason for my visit. Just about 6 feet away from all the other patients sitting in what passes for a “waiting room” (really just a hallway with some uncomfortable chairs in it).
I’m not concerned about HIPAA. I’m concerned about how little my doctor cares for my privacy in their own office.
SPM member Erin Moore (@EKeeleyMoore) is one heck of an activist parent. She sees the future, she has a stake in it – a kid with a chronic disease – and like many of us, she’s not waiting around for someone else to make it happen: she’s engaged in creating the future that her son needs.
Her son has cystic fibrosis, which to little kids sounds like “65 roses.” Her blog is named for what follows logically – the next thing after CF, the next thing after 65: 66 Roses. This post originally appeared there in April; it’s the text of a speech she gave to the leadership of the Cystic Fibrosis Foundation. I’ve taken the liberty of adding emphasis and section breaks, to imitate a speaker’s style.
See updated news at the end! — e-Patient Dave
My name is Erin Moore and I have a 3yr old son who has Cystic Fibrosis. This morning, I wanted to share with you a story about why I think that creating a Collaborative Chronic Care network for Cystic Fibrosis would be hugely beneficial to our community. [See our earlier posts about the highly participatory "C3N Project."]
I arrive for our clinic appointment around 7:45am. The last time we were here was 3 months ago. Usually, we are ushered back to a room within 15 minutes of arrival. A nurse greets us shortly thereafter to review our medicine list and address any issues that we’ve been having. Just the other day he was coughing up a storm but seems to have gotten over it. Should I talk to the dietician about his diet again? His weight is up and his stool seem “normal” but I’m always anxious about his lack of interest in food. I wonder if an RT [respiratory therapist] is available to talk a little bit about his airway clearance. I don’t want to be a bother but I sure do think the airway clearance he had in the hospital this summer was more effective. I wish I knew what they were doing differently!
Next up is the doctor.
SPM member Kelly Young is one of the most spectacular, potent, world-changing e-patients I’ve ever seen. (See our many posts here about her activism.) Aside from all her work on RAWarrior.com and her Foundation, see how she uses this case to teach. Peer-to-peer healthcare:
Research of an engaged patient rescues her elbow
I hope you enjoy this inspiring story of a young woman’s struggle to get the best treatment for her elbow destroyed by Rheumatoid Disease (RD). Carolyn is a brave patient who researched to find a procedure to relieve her pain and restore movement to her elbow. She illustrates key strategies for e-patients battling any tenacious or evil disease like RD.
Guest blogger Kathy Kastner gives us an overview of the health literacy resources on the Internet. It is an important topic – how can patients be engaged and participatory if they don’t understand what they are told? Kathy Kastner is Blogger and Curator for bestendings.com and ability4life.com
Health literacy fascinates me because it’s so much more than writing for a specific grade (3,5,8 )level. It’s context and interpretation, layout and font size (in print), and tone and body language (in person)
The American Medical Association has a terrific video,’ You can’t tell by looking’ http://www.ama-assn.org//ama/pub/about-ama/ama-foundation/our-programs/public-health/health-literacy-program/health-literacy-video.page (alert Facebook Group: ‘But you don’t look sick’)
Guest blogger Peggy Zuckerman tells us a story about a young competent doctor and how transparency and openness is key to giving better care. Peggy Zuckerman never intended to be a patient advocate, not even a patient! But after her diagnosis with a “tiny, scabbed-over ulcer”, later determined to be metastatic kidney cancer, she became a patient. And after gaining support and knowledge from online friends and resources, she became an engaged patient and patient advocate. She blogs about kidney cancer and patient engagement, www.peggyRCC.wordpress.com . Currently in her last quarter at UCLA in their Patient Advocate course, and alive nine years after her cancer diagnosis, she thinks as learned and taught a thing or two about being a patient and an advocate
Yesterday I spoke to my 78-year old stepmother, who lives in a big town in South Dakota. That translates to a small rural town, by any standards but in the Dakotas. She was referred to a local dermatologist after her primary doctor noted that she had a small cancer on her upper lip.
Waiting in the small clinic treatment room she examined the mix of diplomas, and found the last one given to the referred doctor—with a 2012 date. In came the doctor, who looked at least a few years older than her college-age grandson, but not by much, she said. The doctor greeted her by name, shook her hand, and noted that she had seen his predecessor, who had since retired.
“Couldn’t help but notice your 2012 diploma,” notes my stepmother.
One of the most-quoted eye-opening quotes in “Doc Tom” Ferguson’s e-Patient White Paper is this:
As Donald Lindberg, director of the National Library of Medicine, explains, “If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
It’s in a section titled “Clinicians can no longer go it alone.” It makes the point that it’s entirely reasonable for engaged, informed e-patients to extend the reach of their clinicians, by seeking all the information they can find.
I just got a great update to that statistic. I’m at the annual ABIM Foundation Forum, and Maureen Bisognano (president of the Institute for Healthcare Improvement) just showed this:
27,000 published clinical trials per year. Can anyone possibly keep up with it, by relying only on what’s in their memory?
This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn. Here’s how to become a Society member, individual or corporate.
- This blog is e-patients.net. Subscribe via RSS or email, tweets etc.
- Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM)
“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”
- Our manifesto: the e-Patient White Paper (PDF), in English and Spanish
- The Society’s member list, board and officers, and member listserv archives (members only)
- Our founders
- Guidelines for submitting guest posts about participatory medicine, for this blog
- Author guidelines for submissions to the Journal of Participatory Medicine
- Wikipedia pages for participatory medicine and e-patient
This summer, I am reflecting and writing about what I wish that I had known earlier about getting good care following active cancer treatment, based on my experience with five different cancer diagnoses and what I have learned from others.
If you have been diagnosed and treated for cancer, I invite you to join me. Interested in writing a blog for this series? Get in touch. Have a response to mine or others’ insights? Please comment.
Let’s share with others hard-won lessons learned over the years about what it takes to find the right health care and make the most of it as part of our effort to live as well and as long as we can.
PS-Take a look at the Prepared Patient blog. I just released: “I Wish I Had Known Earlier…For Many of Us, Symptoms, and Late Effects Accumulate Rather Than Fade Over Time.”