An excerpt of a post on the Iodine blog:
Imagine living with a condition so rare that every time you see a new doctor they confess to Googling it outside the exam room door.
Peggy, a woman I met in my fieldwork, lives with Marfan syndrome, a condition that affects the connective tissue of 1 out of every 5,000 people in the U.S. She developed chronic kidney disease late in life and realized that she was the only person tracking the interactions of all her medications. She stayed in touch online with people who share her conditions, and when a doctor prescribed a drug that Peggy knew to be lethal for her, she spoke up.
“When I explained to the prescribing doctor that I would not take it,” she recalled, “he challenged me and told me that for 20 years he has been telling all his patients to take it and no one else has ever complained.” But Peggy would not back down. She suggested the doctor look online to see for himself. He returned to the exam room a few minutes later to say thank you, promising that his practice would change in the future to screen for people with her combination of conditions so they would not get that drug.
Peggy’s story, of course, is exceptional. Few of us live with such rare and serious conditions. We amble along, not too concerned as long as we can afford our medications and they seem to be working.
But Peggy’s story is also a template for a more universal need. Millions of people have intimate, first-hand knowledge of a wide range of drugs and, up until now, had no way to share it.
For example, the Centers for Disease Control estimates that about half of U.S. adults took a prescription drug in the past month, but just 3% of internet users have posted a review of a drug or treatment online, according to studies I led at the Pew Research Center. That gap represents the gulf between a vast need and available resources. And it also demonstrates how much value could be created if each of us took a very simple, very human, action: To share what we know.
What if all of us could share what we think – what we really think – about the drugs we take? What if we, like Peggy, could benefit from the experiences of other people who share the same health conditions and concerns?
I believe that peer-to-peer sharing of experiences could transform health care.
Talk about implicit assumptions! Wow.
> Imagine living with a condition so rare
> that every time you see a new doctor
> they confess to Googling it outside the exam room door.
Confess?? No, kudos! Until we get over the cultural assumption “Doctors are supposed to know everything” we’ll have train wreck after train wreck!
Also – in my view, the extreme example of a one-in-5000 condition spotlights what I increasingly see as a universal law: for all of us, nobody but you is in a position to keep track of everything that needs to be tracked.
Perhaps #2 is a special case of #1, “supposed to know everything.”
One of the most hopeful and transformational things I’ve heard in recent years is the new “Here is my data” model announced at the gigantic Dreamforce conference this fall. (“Here is my data” is a total flip of “Gimme my data” – the patient is the aggregator, and when a new provider enters the picture, the patient tells them “Here’s my data.” No begging or tooth-pulling or HIPAA threats – the patient keeps the data and gives it to the provider.
Here Is My Data (Twitter @HereIsMyData is a collaboration between
1. Salesforce.com (huge vendor of cloud data management systems, mostly known for sales tools; very configurable – I used to run one)
2. Philips, the huge global Dutch company, which provides a layer to keep data private and secure, conforming to regulations of many countries
3. Radboud U medical center, the university that hosted my TEDx Talk, among other things. They provide the patient-centered application layer that collects data from devices and other sources.
Consider that Epic (the biggest US EMR vendor) has revenues of $1.2 billion, compared to about $30 billion for Philips and $4 billion for Salesforce. Those players can develop tools that are infinitely more user friendly, and customizable, than anything in the EMR industry.
And to your point, Salesforce has always had a philosophy of the data belonging to you, the customer. Share away.
Back to the top: “Confess to googling”?? My physician, Dr. Danny Sands, openly talks in his speeches of “The power of ‘I don’t know.'” Good for him – who wants a doc that hides from reality??
LOVE this dual mind shift — to *welcome* the “I don’t know” and the sharing of data. Thank you!!
Meanwhile, I just received an advance review copy of Eric Topol’s new book The Patient Will See You Now, due out January 6. Mind=blown. Talk about “here is my data” – that vision seems to be more of a reality already than I would have imagined.
My gut says “So why don’t we all have it now?” And the answer is “Because we don’t all (patients and clinicians) know it’s already possible.”
Bloggage to follow.
I’d also say that we don’t have it now because of the system.
Some doctors and patients do believe, 100%, in this very wonderful and mind-blowing idea. And they are working hard to make it happen. But doctors are often just as stymied by the powers-that-be (and profits-that-be) as patients. I love the idea of all of us working *together* to create the best-possible *health* (not health*care*) system.
Thanks so much for these comments! You may want to also check out the conversation happening on the Iodine blog with Sherry Reynolds and David Goldsmith:
http://www.iodine.com/blog/why-sharing-is-the-future-of-healthcare/
Susannah – I am working on an article related to this. I’m a regulatory health care attorney (former partner at McDermott Will) who just happened to have a son who had heart surgery as a baby. I have been fascinated by the congenital heart defect world (#1 birth defect) and what happens online compared to cancer. It’s much harder to share information in pediatrics because it’s like interfering with someone’s parenting. Would love to connect sometime – I noticed you are involved in Health 2.0. I know Matthew well and ran a few Health Law 2.0 events for him. Karie 530.219.0135
Thanks, Karie! We’ll connect offline.
FYI for anyone: my contact email is susannahRfox (note the R) at gmail. For productivity reasons I often don’t check email until the late afternoon, but I do check it daily.
Hi Susannah,
Wow this article really resonated; apart from ‘the sharing first hand info challenge’ when a relative was diagnosed with a rare sarcoma—there were two other challenges I faced 1. Even if you got first hand info, there was no way (in many cases) to check it’s credibility
2. The wrong door: You might Google stuff and check the first couple of hits, which is what most people do, but the really useful stuff might be 5th or 6th result.
So I founded a company that would be a ‘universal forum’ for anyone Googling (or using Bing or any other search engine) to find others interested in the same stuff; also we built a pretty sophisticated ratings algorithm to bubble up expertise. We got this pretty awesome thing built…but are not quite sure how to market it…would love some advice!
thanks,
Narayan
I’m so glad it resonates with you (and that you found my blog after reading the full post on Medium so we could talk about it).
Credibility, wrong paths, and depth are all critical issues when people are pursuing health information. If you’ve got a solution, I want to learn more about it. I’ll check out Hudooku and post back if I have suggestions. Hopefully other people will weigh in, too — that’s the best part of my blog, to be honest: the community that often forms here. Thanks again for your comment.
This video nicely encapsulates what we are doing: https://www.youtube.com/watch?v=J5YWJPen_9k