Any of us would probably have paid to be at the gathering of over 1000 medical school deans, faculty and residents at last week’s American Association of Medical College’s (AAMC) meeting to hear Anna Quindlen deliver her speech, Healthcare in an Age of Information: How Doctors, Nurses and Consumers Can Make One Another Better. [Her speech is available until 12/3/2013. Not sure about access after that.]
Quindlen, a Pulitzer Prize winner and best-selling author, gave the Jordan J. Cohen Humanism in Medicine Thought Leader Session at the AAMC annual meeting, sponsored by the Arnold P. Gold Foundation. According the this foundation, these lectures “feature prominent speakers on topics related to humanism and medicine”.
Every participatory medicine advocate should read it and put it in their Important Documents for All of Time. Her powerful words and stories got to me, and I wasn’t even there. I would liked to have seen the faces of everyone in that room. Were they listening, really listening, to hear what she was trying to say (her primary message)? Did they recognize the distinction between how simple her message was, and the magnitude of its impact? Did they understand that health care is just another part of society – like journalism – that must embrace social change or implode?
I can’t do justice by summarizing her speech, but offer some of her comments to provide a glimpse of their import:
As she shares her story of two surgeries with very different experiences, she implores clinicians and the healthcare team to answer the question,
“Do you know anything about me?”
When they go about their work and don’t seem to care or to notice who she is and what she wants, she describes a sense of feeling like they’ve
“..lost their mind, or lost their way”.
Quindlen gives us great personal insights talking about her father’s tragic injury. The professionals caring for him and the family were fully attuned to their needs, offering high-touch, meaningful care. They listened, they noticed, they asked and listened again.
To the meeting audience, she offered elegant recommendations:
- try to be present in the moment
- acknowledge uncertainty
- practice empathy
- try to be kind
She also paints a parallel between medicine and journalism. In news, changes in consumer information seeking created greater sharing and dissemination. There’s been a shift of power in who holds information. She sees the surge in quick clinics and DIY care as responses to changing consumer/patient needs. She believes healthcare needs to use the same digital tools to shift the power and provide services that are wanted.
Thank you, Anna Quindlen, for a landmark essay about participatory medicine.
7:39 a.m. ET – The European Charter of Patients Rights was described in a stimulating presentation by Mariano Votta, director of the Active Citizenship Network. My post is here. They view being an active empowered patient as just part of a being an active, empowered citizen. How great is that?? (In our view at SPM that’s kind of obvious, but you don’t hear it discussed much, anywhere!)
And naturally, being active and empowered in anything requires access to the relevant information – another them of SPM.
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
- Volunteering: volunteer@
- Blog: email@example.com
- As a Society blog, we do not accept unsolicited guest posts from non-members. See our Guest Posts page.
- General information: firstname.lastname@example.org
And in this time of critical change, as medical record systems roll out, the November cover story by Senior Editor Diana Manos is all about patient engagement through the medical record. This is terrific news, because now is the time when systems are being configured and policies are being set. And two things I love are at the core of the article: SPM people, and the OpenNotes project, which we’ve often written about here.
The subhead says “What happens when patients get involved? Better outcomes.” SPM co-chairs Dr. Danny Sands and I are shown, as is SPM health policy chair David Harlow. Also shown and quoted are the principal investigators of the OpenNotes study, Jan Walker RN MBA and Tom Delbanco MD.
Colorful graphics highlight key findings of OpenNotes, which all boil down to this: People perform better when they’re informed better. And contrary to some expectations, patients do not freak out when they see what the doctor wrote.
You can read the article and the entire issue online now, and download to PDF. (Bonus: page 37 is an “exit interview” with Farzad Mostashari, the outgoing leader of HHS’s health IT office ONC.) The print edition should be delivered next week.
For new visitors to our site, here are links to previous OpenNotes posts:
- The study begins – June 2010 (including the Seinfeld episode where Kramer impersonates a doctor to get Elaine’s chart)
- The results, Oct. 2012
- All posts about OpenNotes, with interim findings and how it’s rolling out.
Here are screen captures of the other pages:
A cross-post from susannahfox.com…
On Friday, I spoke at the Albert Einstein College of Medicine, along with Kevin Pho, MD. During a planning call, the symposium organizers had shared results from a faculty survey: Fully two-thirds do not use social tools on a regular basis. Asking them, therefore, to spend a half-day learning about social media was a pretty bold request.
Inspired by Kathy Sierra to focus on the users’ (that is, the audience’s) needs, I began with a question that many busy clinicians might be asking:
How do we know that social media is important to health care?
Why should they take anyone’s word for it? Where is the evidence?
Meaningful Use Stage 2 includes the requirement that health care providers with EHRs seeking Meaningful Use incentive dollars demonstrate that 5% of patients actually view, download or transmit their data.
The HIPAA/HITECH Omnibus Rule, which is now fully in effect (though the enforcers of the rules are “nonessential” and not on the job during the current government shutdown), empowers patients to request their health care providers to deliver their records electronically in a format of the patient’s choosing (so long as that is reasonably doable by the provider).
Taken together, these two regulatory levers hold promise for better patient access to records, and to the usability of those records for individual patient care and for broader research purposes, too.
As we lumber down this road, I would like to bring to your attention a presentation I gave a couple weeks ago at the StrataRx Big Data in Healthcare conference, promoting the idea of the “rainbow button.” Here are a couple of links: my rainbow button presentation and livetweets; some follow-up press coverage on CIO.com that captures some of what I said.
A Powerful Union
Guest blogger Janice McCallum shared her interview from the StrataRx conference. Janice McCallum is a health data strategist at Health Content Advisors. Her blog and tweets (@janicemccallum) reflect her focus on the value of information to all healthcare stakeholders and the importance of patient access to information. She has been a member of the Society for Participatory Medicine since 2009.
In 2007 and 2008, I organized an event called Health Content with my partners at the InfoCommerce Group. Our objective was to highlight how the digitization of healthcare information used by all stakeholder groups would affect the healthcare industry. Health Content covered topics such as Bringing Together Content with Tech, Healthcare Quality Metrics, Price Transparency, and Personalized Medicine. Needless to say, we were ahead of our time.
Fast forward to the present and O’Reilly Media’s StrataRx conference, which is described in part as “a unique forum bringing together the diverse communities driving innovations in big data analytics for healthcare” is filling the gap left when we discontinued the Health Content conference. A lot has happened since 2008. For one thing, the term “big data” wasn’t an overused term back then! Also, huge advances have occurred in genomics and personalized medicine, including significant cost decreases for sequencing genes. Furthermore, adoption of electronic health record (EHR) systems has experienced strong growth in large part due to federal incentives. It all adds up to major new sources of data and opportunities for new uses of health data.
But, we’re still struggling with how to define acceptable methods for exchanging data and providing the right kind of incentives to reward people who add value to data.
In the interview below, I talk with Andy Oram of O’Reilly Media about my observations from StrataRx.
If the video above does not work, please use this link http://www.youtube.com/watch?v=POPlhMXysYQ&feature=youtu.be
A couple of outtakes:
- We’re relying too much on old business models for health data exchange
- We need to remove information asymmetry barriers between providers and patients
- Patients can provide more than just data; they can provide insight into what the data means in the context of their own health.
In short, we’re at the early stages of realizing the value of health data and there remain a lot of privacy, access, and other business model details to work out.
See: StrataRx for more video coverage of the event.
We’re organizing a tweetchat this Saturday – October 12 at 3 PM ET to welcome MedX partcipants into the Society for Participatory Medicine.
We will discuss our communications tools, and other topics of interset to our members: e-patients, health care social media, and patient-centered design. Come meet the friends you made at MedX and share health stories with others.
- Have you read the #epatient white paper yet? http://participatorymedicine.org/
- What would you like to see on #epatient blog? http://e-patients.net/
- Have you dived in to the Jounal of Participatory Medicine (JoPM)? http://www.jopm.org/
Here’s a link where you can easily follow the tweetchat and participate: http://www.tchat.io/rooms/s4pm
I was so pleased to have SPM president, Sarah Krug, invite me to present at Patients 2.0 – Health2.0 pre-conference. The theme: the patient doctor relationship, and Sarah’s clever metaphor, The Patient Doctor Tango mirrored the patient journey in four stages:
- Finding a Diagnosis
- Preparing for a visit
- Selecting a treatment
- Between Visits
Sarah used the beautifully and oh so smartly-produced video that carefully and thoughtfully aligned the delicate precision, the diligence and dedication required of Tango dancers and of the patient-doctor relationship. As a video producer, Sarah totally wowed me with production values, sensitive scripting and thoughtfully chosen dance steps, as she said: ‘the Tango is a sensuous dance: I didn’t want to distract from my message’.
I was last on the roster, with one of my favourite soap-boxes: patients living lives in between doctors appointments. Certainly, I have my own experiences, opinions and judgements but – coming as I did from MedicineX, where I was privileged to be an ePatient Scholar – woah! did I come with the riches of a diverse ePatient population who rely on their virtual communities for insights from day to day experience and experiments, and for support and understanding.
Many MedX-er ePatients who are also SPM-ers have created apps based on their experience, Natasha Gajewski, creator of http://sympleapp.com/
Another, Amy Gleason, demo-ing www.caresync.com was my co-presenter, who fielded this question from the audience:
“How do you get from ‘n’ of 1- ie patient helping patient – vs rigorous sample size” Amy’s Answer: “I spoke to hundreds of patients, so I don’t understand this ‘n’ of 1”
Meeting SPM-ers was another of a series of joyous OMGs for me throughout both conferences: Fred Trotter, Michael Millenson, Carla Berg, Casey Quinlan, Dr Alan Greene, Ms Cheryl Greene, Sarah Kucharski, Leana Wen, Catherine Rose, Leslie Kernisan.
Wearing my Walking Gallery Jacket meant I could turn my back on another Walker and be assured of a warm welcome. For me, a huge difference when playing in a tech-heavy environment.
Some right-on take-aways from SPMers:
Danny Sands (my co-presenter) : “Sometimes there are no right answers and that’s tough too.”
Dr Alan Green: “Diagnosis is hard”
Cheryl Green: “Doctors are people: have bad days, get tired, have families”.
And from a Health2.0 volunteer, who described himself as ‘surviving several chronic conditions’
“The doctor-patient relationship is to support the patients’ inquiry.”
If you can’t see the video above, use link: http://youtu.be/D9JHTU7LYgM