Patient activists who attend conferences know that it’s been a long climb to get patient voices welcomed. The #PatientsIncluded movement has been around for years, making small dents, but Health 2.0 is one of the best: while they don’t provide stipends to cover travel costs, they
admit patients and caregivers to the full conference free, even if they’re not speakers.
have had patients on the main stage (not just in breakouts) since 2008(!)
since 2010 have added a Patients 2.0 pre-conference, coordinated with our Society, most recently through Past President Sarah Krug of Cancer 101. (Plans aren’t set yet for this year but we do know there’s an informal SPM reception.)
Oh, and for years they’ve been corporate members of our Society. But that’s not what this post is about.
I’ve been to lots of conferences, and when patients are in the room the difference is palpable. It matters.
Peter Elias working with a patient, from the SPM website
Peter Elias MD (in photo at left) is a member-at-large on the board of our Society for Participatory Medicine. See his earlier posts here. Particularly relevant is his Proposal for a TRULY patient-centered medical record, The experience he recounts here, as a caregiver of a family member trying to partner with her providers, fell far short of that vision of true patient-clinician partnership.
There is much to learn here, from the comparison. Current portals were developed to meet Federal reimbursement guidelines – whose requirements were negotiated downward to make reimbursement easier. What can we do, to move beyond this state?
I recently spent nearly a week at the bedside of a hospitalized elderly relative. After discharge, I used the Partners HealthCare portal to notify my relative’s PCP. I gave a very brief (one paragraph) summary of the presentation and hospital course, some pertinent lab and x-ray values, her changed discharge medication list, her status at discharge, the discharge plan, and the 2 items needing follow-up.
I got a prompt and constructive reply from her PCP, which is great.
Not so great was the fact that, because of a 1500 character limit, I had to divide my information into three separate messages. Fifteen hundred characters is less than 11 tweets, and represents a very significant barrier to the quality and safety of clinical communication between patient and clinician.
I provided this feedback to the organization and was told the “…character limit was requested by the clinicians within Partners Healthcare…was set by the development team per the decision of the executive clinical team members.”
They did not comment on my suggestion that if the character limit is important, it should be possible to attach either a text or Word document to a message. (Their system allows only image formats.)
I find this very disappointing. The implication is that the clinicians at Mass General, the Brigham, McLean and others do not really want to allow patients to provide useful clinical information. They want to receive postcards rather than letters, which is the online version of interrupting the patient after 18 seconds. It’s like saying to patients: “I’m really not that into you.”
The institutions that use the Partners Healthcare gateway include:
Brigham and Women’s Hospital
Massachusetts General Hospital
Brigham and Women’s Faulkner Hospital
Cooley Dickinson Hospital
Martha’s Vineyard Hospital
Nantucket Cottage Hospital
North Shore Medical Center
Partners Community Healthcare, Inc.
Partners HealthCare at Home
Spaulding Rehabilitation Network
From my perspective, the root cause of this communication #fail is that portals are generally built without much input from patients and are designed to qualify for financial rewards by meeting CMS metrics, rather than designed to meet patient needs.
The AACH is the professional home for all committed to improving communication and relationships in healthcare. About 200 people attended from US, Canada, Israel, Brazil, Belgium, Australia. Although most attendees were physicians, I met nurses, therapists, coaches, office managers, patients, sociologists, medical students, and researchers. A couple of very low-key sponsors but no vendors present. A pleasant relief.
The conference was designed to maximize interaction, learn from each other, and build skills within work groups and special interest groups. Met several venerable experts. Very open and quite humble: “We have a lot to learn. Especially about patient centeredness.” read more…
A new article in our Journal of Participatory Medicine explores an area that apparently has had no prior literature: the effect of gardening on how well stroke patients engage in their care. From the abstract:
Five main themes were identified from interviews and diaries:
1) the positive experience of nature,
2) therapeutic gardening as a protected self-expression space,
3) contact with nature as a boost for self-efficacy,
4) the plant as a catalyst of the patient-therapist relationship,
5) therapeutic gardening as a bridge between the hospital environment and the outside world.
Post-stroke patients who engage in therapeutic gardening perceived it as a way to foster their active role in medical care, enabling a proactive and positive attitude towards disease management.
Click to read story on USA Today site. (This image is a composite of the page 1 banner (nameplate) and the inside-page Google story.)
Regular followers of this blog know for years we’ve been hot on the trail of the never-ending search for truth, justice, and please some reliable advice on medical matters. Tonight a google alert alerted us to the next round, the next attempt: a column by the ever-vigilant John Lynn at EMR & EHR (see screen capture below), who spotted the news that once again Google is doing its best to upgrade what you get when you google a symptom – a noble pursuit.
Yes, upgrading search results is a noble pursuit. Yes, I like the idea of having someone curate search results so that what comes up is better than random chance.
But there are so many potholes on the road seeking certainty. In the interest of time, since I’m speechwriting tonight, I’ll paste in here what I said in the comments, which is a partial list of what we’ve said here in the past: read more…
This may be THE most important, articulate speech I’ve seen about profound progress in patient power – and why it matters.
This talk by Mark Wilson about OpenAPS, at last Friday’s DiabetesMine D-Data ExChange 2016, contains a metaphor that’s just brilliant, explaining why patients would want to do this. Below the video are a few words for people who don’t yet know what OpenAPS is. (Thank you to Hugo Campos for highlighting this on his Facebook last night – patients spreading the word!) Twenty minutes plus Q&A.
The #OpenAPS movement (Open Artificial Pancreas System) is exploding with articulate patient voices. On this blog we posted twice about it last month from the Quantified Self Public Health event in San Diego and the O’Reilly #OSCON Open Source conference (two talks by Dana Lewis) and last week at the American Diabetes Association conference in New Orleans, for my own blog I interviewed Dana and co-creator Scott Leibrand, and finally met OpenAPS pioneer Ben West … I need to get clear on who did what when!
Industry observers, notice: this is a great big live specimen of what patient experience looks like when patients take the wheel. And notice that it’s not just about a more pleasant “drive” – they’re getting measurably better clinical results.
Eight years ago at the 2008 Connected Health conference in Boston, internet visionary Clay Shirky said “The patients on ACOR don’t need our permission and they don’t need our help.” I never would have imagined that it would go this far, but here we are.
This is patient power, for better health,
enabled by access to information.
Our Society defines Participatory Medicine defines it as “a movement in which networked patients shift from being mere passengers to responsible drivers of their health.” When we wrote that we didn’t have exactly this “driver” metaphor in mind, but it’s perfect. Power to the people – the people who have the need.
A side note on production of this video: I don’t know how this video was produced, technically, a composite of three frames showing the speaker and the slides and the full room, but I love it and I want it! Below the video on YouTube it says “Thanks once again to Amy Tenderich, Howard Look, Brandon Arbiter, Mark Wilson & the Nightscout Foundation for their participation in bringing this broadcast to you. We would also like to thank Ben West, Dana M. Lewis, Scott Leibrand, Chris Hannemann & Nate Racklyeft for their monumental efforts in the OpenAPS community.”
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.
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”
“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!
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.
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.
Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual's health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.
Crohnology Blog: Am I disabled? Ileana Balcu | 10 Nov 2015
The series of blog posts at the online community website Crohnology continues for patients with IBD. Duncan Cross has a post that is interesting for anyone with an autoimmune or other disabling chronic ...
How I became an e-patient: through practice, with coaching (using Lean on the patient side) e-Patient Dave | 29 Mar 2016 The next in our series of "How I became an e-patient" posts. Tyson Ortiz joined a few months ago, having been introduced to us by fellow Lean practitioner Mark Graban. His story weaves together two concurrent threads: learning about a new aspect of Lean, and the arrival in his life of an urgent need for excellence - a newborn son with a serious medical challenge. The outcome is inspiring.
Like many others, I became an e-patient in response to a loved one receiving a terrible diagnosis. In the summer of 2012, my wife was 20 weeks pregnant when we learned that our son would be born with half a heart. This condition made his chances of living to see kindergarten roughly a coin flip.
Perhaps unlike others, for me becoming an e-patient was more of a process than a sudden event. At the time, my personal history was better characterized by shrinking from challenges than rising to meet them. I didn’t really bring to the table the investigative skills or purposeful drive that an e-patient needs to be successful. In all likelihood I would have followed the traditional path of simply deferring to the experts if not for a fortunate coincidence in my professional life.
e-Patient Lisa Adams Ileana Balcu | 14 Jan 2014 In this guest blog post, member Carly Medosch describes Lisa Adams whom she knows from social media. Lisa Adams was diagnosed with stage 4 breast cancer and documented her journey in social media. In another post below we describe the media firestorm that was caused by two articles that criticized her efforts. A hashtag was created to follow the story on Twitter #IStandwithLisa.
[caption id="" align="alignleft" width="200"] Lisa Adams[/caption]
I have a huge amount of respect for Lisa. She strikes a graceful balance between showing a "warts and all" picture of her life with cancer - the reality of uncertainty, chemo, painful tumors, talking to her children about her diagnosis and prognosis, the difficulty of writing while on medication to make her pain bearable - and being a positive and inspirational presence in the world through Twitter and her blog. She is not a self-obsessed navel-gazer. Lisa has created #mondaypleads, a weekly reminder and gentle, loving, motherly nag to make the health appointment that you've been putting off. (If you'll allow a tangent: today is the 17th anniversary of my Grandfather's death from prostate cancer. It wasn't caught in time because he refused to be screened.) Lisa also tweets a daily reminder to find beauty in the world, even if it is difficult, or you have to create it yourself. Lately the beauty she finds is in the caring staff during her latest, prolonged hospital stay. Even her ability to merely keep up with Twitter and blogging is impressive.
Rheumatoid Arthritis Ruined Her Elbow, But Nothing Could Break Her Hope e-Patient Dave | 16 Aug 2013
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:
NOTE: Did you or someone you know participate in a clinical trial the past year? Please see important message below.
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.