For e-patients and others who list themselves on Texas Medical Institute of Technology‘s SpeakerLink, this very meaty post by Society of Hospital Medicine founder and world-renowned leader of the hospitalist movement Dr. Bob Wachter is required reading. After which, you will likely do some required thinking.
A short capture of the post’s purpose: Dr. Chuck Denham, founder of TMIT and the former head of the National Quality Forum‘s Safe Practices committee, has been accused of some very suspicious business practices. We’ll leave it up to you to decide whether or not to continue to list yourself on SpeakerLink. This might be the time to see about either asking TMIT to let SPM take over managing Speakerlink, or for SPM to build its own speaker portfolio platform.
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.
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“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.”
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“Patients Included“ was created by Lucien Engelen in the Netherlands for his initiative to have patients speak at all medical events. We in the patient community are taking it everywhere we can.
But sometimes – as in this story – someone misuses the concept, acting patient centered but with covert motives. We Do Not Like That. So, with Lucien’s permission, for this story we add a “?” to the badge.
This drives me nuts. The best of pharma saved my life! But time after time the industry sticks itself in the eye with a stupid, unnecessary action that gives the whole industry a bad name, and nobody ever says “HEY, KNOCK IT OFF! You’re making life difficult for your colleagues!”
This guest post, by SPM member Sara Riggare @SaraRiggare, a Parkinson patient in Sweden, tells of another dumb, unnecessary black mark on the industry’s name – and how they got busted. (My term, not Sara’s.)
I have friends in pharma. Hey, guys: every time you run into a regulatory problem or lack of consumer trust, it’s because of stuff like this! Police yourselves! Set professional standards, and enforce them! How about a CEPM credential – Certified Ethical Pharma Marketer – which you can strip off someone when they do something like this.
Here’s Sara’s post. Note that Sweden has part of what we need, but it still didn’t matter until an e-patient knew about the rules and looked into it.
Being a maybe extremely engaged patient (e-Patient Dave once called me “super-empowered” and it made me very proud), I am a member of a number of organizations, one of which is the Swedish Parkinson Disease Association.
Here’s a new “must read” for people with a grim prognosis, submitted by Twitter friend @Scanman (Vijay Sadasivam), from the Tamil region of India: How Long Have I Got Left?, by Stanford neurosurgeon Paul Kalanithi.
Seven years ago that was my situation. This was the week that a biopsy confirmed that the blobs in my lungs were metastasized kidney cancer, and what I read was “bleak,” “grim,” and lovely words like that. It’s the kind of experience you don’t forget.
This compelling essay in the New York Times Sunday Review recounts all the things newly diagnosed patients go through, and the doctor’s side of it – how to manage the relationship, and in particular how he and his oncologist interacted. One vital takeaway for me:
- We all want certainty
- There is no certainty.
Early in my illness my sister who’d worked in the AIDS epidemic taught me that there’s no one way to deal with it. Different people have different needs. One of your many tasks is to learn how you (singular and plural) will deal with it.
These lines in particular stick with me, from the library of advice he often gives patients:
- “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.”
- “five-year survival curves are at least five years out of date.”
In a sense, the patient and family and clinician in this soup are walking a cliffside trail in the dark. For me the corker is a line he quotes from Samuel Beckett:
“I can’t go on. I’ll go on.”
This post originally appeared on NickDawson.net here.
Spoiler alert: I’m not dying and there doesn’t appear to be anything major wrong with me.
I know, you hate spoilers. But I thought I’d get that one out of there way. It makes the rest of this considerably more pleasant for us both.
I’ve got a new personal electronic medical record. I’m able to store and track my health history. I can add and edit my own notes. I can pull in data from external sources like my quantified self gadgets. I can share data with my provider, or family members. It’s secure, it’s cloud-based, it’s mobile and it’s on all major platforms.
Evernote is my personal EMR.
For U.S. residents -
I spoke last month at a health price transparency conference in Washington, sponsored in part by Robert Wood Johnson Foundation. In a side session we saw presentations by the winners of the Health 2.0 Developer Challenge for shopping tools. Consumer Reports won first place for shopping apps for their Hospital Advisor: Hip & Knee app. (The link has their demo video.) It’s a fabulous tool for comparing prices and quality for hip and knee replacements.
Now they’re expanding the data behind the app, so they want information from us. Team member Chris Baily sent this request – feel free to share widely:
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.
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.
Update 9:20 pm ET: see important additions at the subhead below. When I wrote this today I didn’t have time to dig for excellent links like those. Thanks to Susannah Fox’s Twitter feed.
One of the best social media patient figures I met, long ago, was @AdamsLisa – Lisa Bonchek Adams of LisaBAdams.com. There’s a firestorm today in the SPM member listserv and on social media over a pair of pieces that are in my view incredibly offensive and clueless, utterly missing the point of the value of social media. I find this patently offensive, and apparently there’s more to it than that – writer Emma Keller didn’t tell Lisa she was working on a story, published private emails and DM’s from Lisa without asking, and didn’t even tell her the piece had been published. What the heck??
And yet the headline of her piece questioned Lisa’s ethics in tweeting her own illness!
In 2014, the baby boomers (individuals born between 1946 and 1964) will turn 65 at a rate of nearly 10,000, individuals a day. Over the next five years 17 million baby boomers turn 65. That’s a lot of people retiring, joining the Medicare system developing chronic health conditions, and needing more care as they age. The question is how the healthcare system will manage the needs of this generation and of other consumers of health in 2014.
The good news is that legislative mandates passed during the Obama Administration that kick in during 2014, focus on care collaboration, care coordination, and patient-centered care as well as using technology that should result in better outcomes for everyone.
The next day I made a correction per Dick Morris’s comment, and toned down some of my adjectives to be more suitable outside of our private listserv. Dr. Bratton, of course we welcome dialog.
In our Society for Participatory Medicine, part of our work is to change how people think about relationships in medicine. That involves developing and spreading new ideas. And that’s what TED Talks are about – “ideas worth spreading.”
Three days ago a TEDx Talk from San Diego was posted on YouTube, titled What’s wrong with TED Talks? by Benjamin Bratton, Ph.D. (@Bratton), associate professor of visual arts at UC San Diego. It’s getting attention on social media, because Dr. Bratton’s post on his own site was cross-posted (with new prolog) on the often-viral UK site The Guardian, with the title We Need to Talk About TED.
Then yesterday, on the SPM members-only listserve, SPM co-founder Joe Graedon of Peoples Pharmacy pointed to the Guardian piece, and a robust discussion started up. My view of the subject is different from Dr. Bratton’s, and I wrote a long reply to SPM member and fellow kidney cancer patient Peggy Zuckerman. Here it is. (I only speak for myself, not for SPM, and of course we always welcome discussion.)
Read the Guardian post first, which includes the transcript of his talk, or some of this won’t make sense.