There are stages of any movement, and make no mistake, the shift to participatory medicine is a social movement, a full-bore cultural movement. It’s a change in roles, a change in expectations, a change in beliefs about the validity of a new party’s perspective – in this case, the patient’s.
I’m fond of pointing out milestones, the turning points in our movement. One was the founding of the Society for Participatory Medicine in 2009. Another was when patient voices started to be invited to speak about patient issues in Washington policy meetings. Another was when the Institute of Medicine said in 2012 that a cornerstone of medicine must be “Patient/Clinician Partnerships” with “Engaged, empowered patients.” Then the OpenNotes project, the BMJ editors announcing their Patient Advisory Panel, the founding of the Patient Voice Institute last year … all are signs of the movement maturing and gaining acceptance in the establishment.
Today I’m thrilled to announce a small but significant step in another dimension: NEHI, the Network for Excellence in Health Innovation, has offered me a Fellowship in Patient Engagement – a part time six-month project, advising them about patient perspectives.
Here’s NEHI’s vision map – click it to visit their site. And note what’s at the top of the circle: Evidence, Action, and Policy Impact. My kind of people!
Now the work starts. May this be the start of many such initiatives in many organizations that focus on improving healthcare!
For the record, here’s the 55 minute video of my keynote at NEHI’s 2013 annual meeting … as it says at the outset, this was a new approach: a new beginning and a new ending.
Thank you, NEHI, for your vision, and let’s do this thing!
I’m going to do something unusual (for me) – drop a video in here and not try to explain much about it. It’s about the future but don’t have any particular prediction, except that things are going to be changing really fast, as in scary fast. So you might want to loosen up your thinking. (I’m not affiliated with any of this; these are my own thoughts.)
Fair warning: this will look like lunacy, and I won’t get into big arguments about it here. You might want to watch this a minute at a time, perhaps pausing every time the whiteboard gets erased – it’s too much to take in all at once.
This is also the world depicted by my friend and colleague in Budapest, Dr. Bertalan Mesko (aka @Berci), who calls himself a “medical futurist.” Unusual, huh? Well, you can’t look at today’s medical reality (as amazing as it is) with the same mindset as you can with the “exponential” mindset.
Why do I think this is valid?
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Click to view article PDF (open access)
On Twitter tonight I learned from Dr. Sachin Jain of a November article that should be of interest to all of us who want to work toward full patient and family engagement in all aspects of medicine. To be sure, the changes we’d like are not always simple, and one example is expanding family access to the ICU.
Virginia Mason Medical Center (VMMC) is widely known for being far far more patient-centered and quality-oriented than most medical institutions – including, in this case, even the really challenging parts. I hope I don’t get in copyright trouble for pasting too much in here, but the whole article is Open Access (no charge) so have a look, under the heading “Problem: Despite tradition, genuine need to open doors”:
Over time we became more aware that this traditional model was badly disconnected from the needs of our patients. The Institute of Medicine emphasized that families serve as a healing influence by providing comfort, connectedness, energy, self-esteem and wisdom; there is little or no evidence to indicate that the practice of family member presence is detrimental to the patient, the family or the health care team. Indeed family member presence during invasive procedures or resuscitation should be offered as an option to appropriate family members.
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This is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to speak on a subject but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.
Academy cadets, I hope this entry will be useful in one of our key tasks: conveying to potential clients that there’s genuine business value in hearing a capable speaker present the patient’s perspective.
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Click to view the video
This post is a mixture of glee and facts. I hope you’ll find plenty of both. Because, you see, lately I’ve been speaking and blogging a lot about the changing role of patients in clinical trials … and in the spring of 1972, I myself was a subject.
In the US government’s pot smoking experiments.
As you’ll see, the timing was amazing – they told me I was subject #1. And, as you’ll see, there’s evidence they meant it.:-) To watch, click here or click the image at right.
I’ve been waiting years for the right moment to share this story, because it’s a hoot – and this year the time finally came:
- It had to be the right setting, and Daniel Kraft’s Exponential Medicine conference is just right – it’s wiggy and futuristic but real science and realistic.
- The story also needed to be told in a valid context, and everything lined up:
- In September fall I spoke in Madrid (blog post) about the role of patients in research
- At the same time, the Wall Street Journal had a great article about patients being listened to differently by researchers (my post)
So I pitched the idea to “xMed” director Daniel Kraft MD (who’s also a fighter pilot, btw), and he agreed. I guess it worked out, because today on Facebook (see illustration) he posted the video and said:
Brilliant lessons … 1970s experience as a marijuana clinical trial subject at MIT … has implications for the design of today’s clinical trials … one of [the] highest rated (and funny) talks
That sounds like a happy conference organizer.
Enjoy, and please share widely! Who said science can’t be fun??
For a number of reasons I only got 90 minutes of sleep the night before, and I made (at least) these mistakes:
- Early in this speech I show some slides from my TED Talk in 2011. The slides have a typo – they say 2009.
- Around 6 minutes I say that Dr Bettina Ryll shared my session at the Madrid conference. Dr Ryll did create the slide I showed, but my session was shared with Mrs Anastassia Negrouk, who’s also in this speech.
- On the very last slide the William Gibson is correct but I misspoke – I said “not easily distributed” when it should be “evenly.”
Related links cited in this speech
- The TED Talk
- The IOM’s 2012 report Best Care at Lower Cost, with the important declaration that the learning healthcare system should be “anchored on patient needs and perspectives”
- The Wall Street Journal article that I cited, on researchers actively engaging patients on how they see the issues
- The FDA announcement that I mentioned at the end, announcing patient participation in medical product discussions
After 198 days on the road this year, 64 trips, 180,771 miles and ten countries, I’m taking a break. Off duty until January, then spending the first week of 2015 at meetings in London.
I’ll probably still blog when things come to mind. For those, scroll down. Meanwhile, for time-sensitive communications, see my Contact page.
May the holiday season bring you and yours all the best – and thank you to all my clients who’ve supported this important movement for better healthcare around the world!
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Photo: Getty Images, on the BBC story. Click to visit it.
Joe Cocker has died of cancer. The BBC story, twenty minutes ago, is here. Holy crap, he’s (was) less than six years older than me. (I’m going on Medicare in six weeks!)
The man was a maniac singer. My biggest laugh of the past decade was when someone put subtitles on his epic Woodstock rendition of “I get by with a little help from my friends.” See the YouTube below. (Email subscribers, if you can’t see it, coming online to see it here.)
Joe, this one’s for you, man. Hope you’re having a wild time, wherever you are now.
Click to access the livestream player
A very quick note for a last-minute event: I’ll be interviewed live today on W Radio Colombia. (Producer Marianggela Cortés Forero tells me it’s “a news station with audience in Latin America, EEUU and Europe. Number one in Colombia.” (Twitter: @WRadioColombia)
Here’s the Listen Live link. If you miss it, a recording will be posted after; I’ll add the link here.
- Here’s information on the Spanish edition of Let Patients Help! A Patient Engagement Handbook, on Kindle and in print.
Kerri’s photo on her blog
I’m going to do something really rare: I’m going to endorse a book I’ve barely started reading. It’s Balancing Diabetes: Conversations about finding happiness and living well, by the famous diabetes blogger Kerri Sparling, aka @SixUntilMe. (She was six until she was diagnosed and became the “me” she is today.)
This endorsement is rare because I’ve always said I can’t endorse something I haven’t consumed. (Did you know that most book blurbs are written by people who haven’t read the book?) But this situation is out of the ordinary:
- Last week at the SuperPatients event in Providence, I witnessed what a powerful speaker Kerri is. She owned that room for her 20 minutes – like a good TED Talk. And she wasn’t just a capable speaker – she created the world of living with diabetes. As much as I’d heard about diabetes through the years, I had never gotten the world of living with it. To create that in minutes takes extraordinary skill.
- She signed my copy of her book, and last weekend I started reading it. Bingo, in the first pages it was clear that this is the same voice. (I should have known, because her blog is just as direct and powerful, but so often books come out different. This one works.)
So I’m endorsing. Buy it if you want to understand life with diabetes, or if you want a great read about how different a patient’s point of view is, compared to what we read about the disease per se.
I also love that Kerri has woven this disease into her life, and though she doesn’t love the disease, she loves her life. That’s important, because the book is about balancing, about having a life you love.
See, that’s patient centered care: looking at care from the patient’s perspective, separate from what the lab tests say.
p.s. I first learned of Kerri years ago when she blogged about her pregnancy. Why’s that remarkable? Because when she was diagnosed as a child she was told she shouldn’t have children. Well, as fans of her Facebook page know, today she has one of the most remarkable, amazing four year olds in the world. The child’s nickname is Birdie… check the cover.
Ginny and “Chester”
My wife Ginny is a veterinarian. Being a vet like her is different from being a human doctor in several ways:
- Vets emphasize prevention, to avoid avoidable disease
- For years many have offered “pet portal” software to view your records from home (let me Google that for you)
- Treatment decisions are entirely up to the client (though there are certainly haughty vets who don’t like to be questioned)
- Cost is always a consideration
- To her the “patient” is not the same as the client
- and many more.
But probably the biggest difference is embodied in the excellent talk below, from TEDMED 2014 in Vancouver, in which a “people doctor” gets called to consult … at a zoo … and discovers a world of new insights that have changed how she practices.
The amusing thing is that Ginny has always joked about how “people doctors” only have to know one species – and often only one system in that specialty – while veterinarians have to know all the systems in all the species they treat. (Eyes, heart, teeth, kidneys, you name it… not to mention variations like a dog or cat uterus having two “horns” (forks).) That difference turns out to be a joke at the end of this.
It’s a thought provoking 18 minutes. Enjoy. (Email subscribers, if you can’t see it, click here to come online.)
Here’s a link to the Zoobiquity conference she mentions, where vets and people docs share thoughts. That would be fun to attend. Check out the site – its banner asks, in sequence:
- Do beluga whales get breast cancer?
- Do dragonflies get obese?
- Do pandas get eating disorders?
- Do flamingos get heart attacks?
- Do koalas get STDs?
Then, this … check out the intersection:
p.s. This talk is part of a new list created on LinkedIn by Dutch colleague Lucien Engelen, 10 TED Talks that change(d) healthcare. You can read it there, or you can watch it as a YouTube list. But this one isn’t on that list.)