This series of requests is usually about finding a good online patient group, but what the heck, why not this?
A heart patient named Chris from Long Island contacted me looking for something I’ve sought myself: a tool for organizing one’s records. I hope everyone who helped me with that last summer will be tolerant of my weak memory if I forget to mention theirs – my needs ended suddenly mid-search and I never got around to finishing the hunt. So here we are. This time we’ll record it in the comments!
Chris has hypertrophic cardiomyopathy, the enlarged heart-muscle condition that Hugo Campos has made famous. He’s never heard of Hugo, nor has he heard of the AliveCor, but he sure shares Hugo’s understandable desire to be responsible for his own well-being! That’s what we call being an empowered, engaged “e-patient.”
Here’s what he sent:
… I have been an advocate for myself insofar as I am able to try and garner information and ‘house’ my medical records for easier, access, transmittal and peace of mind. I fervently believe that this is a requisite portion of partnering with a doctor or medical teams to handle issues and provide solace.
As I had mentioned, I was diagnosed with a cardiac issue and being adopted, I never knew of my medical history. I have looked for years to find websites, apps and e-devices to scan, store, and file my medical history into one accessible hub. I simply cannot find one specific rating system or even helpful links that would provide more than a cursory glance into this technological world.
Here are the tools I know of, in alphabetical order, from past discussions:
As an activist for the patient movement – a social change movement – I look for and often cite signs of real change in the establishment, documenting that it’s increasingly accepting patient voices as a real part of the future of medicine. Examples:
2011:TEDx Maastricht was the first TED conference to prominently feature patients as its speakers, produced by Radboud University Medical Center (UMC) in the Netherlands
Before public speaking… If you’ve got a presentation to give at work or school — or are perhaps getting ready to speak at a TEDx event? — we recommend these talks to help get you pumped up.
Thanks to college near-classmate (a year behind) Larry Fagan MD for this, which was in turn pointed out to him by one of his students, Sarah Aerni. (I met Larry for the first time last month at the Stanford Medicine X conference!)
All told these will take 80 minutes. If you’re not willing to spend that on being a better speaker, you’re not a cadet. :) The roster of talks:
Everyone in the “health 2.0″ world knows that the Health 2.0 conference is the conference in the health 2.0 world. It’s where everybody has to be, if they want to be known in that high-powered innovator world. Proof got even deeper when, a couple of years ago, they shifted venue from downtown San Francisco to the belly of the beast: Silicon Valley.
Less well known is that Health 2.0 has a number of outlying communities, and one is in Sacramento, the state capital. Next month I’ll be speaking there, at a free event open to the public.
6:30 – 7:15 Mingling and Munchies
7:30-8:15 e-Patient Dave (including time for Q&A)
A special thanks to one of my earliest Twitter buddies, @GoodLaura – Laura Good – who, it happens, is a startup geek in that very area and involved with Health 2.0. My first private twitter messages with Laura were in 2009! (If you must know, it was about some typesetting arcana that were raising puzzles in Microsoft Word.) How sweet it is to cross paths IRL with long-time online peeps!
Regular readers know that a large part of my becoming a global advocate has been the vision and influence of Lucien Engelen at Radboud University Medical Center (RUMC) in the town of Nijmegen, on The Netherlands’ eastern border. Way back in 2010 he announced that his upcoming TEDx would be primarily about patients; the TED Talk I did there put my speaking career into a catapult; then he put his own money where his mouth is by launching the #PatientsIncluded initiative, saying he would not attend any event where patients weren’t actively encouraged to participate; and he has continued to lead in thoughts and actions, every year since (including 3D-printing my lung metastases last year, below). Lucien is the standard, the exemplar of the “pay me with action” clause of my price policy.
For that reason, when he asked me this summer to participate in something even newer – something brand new – I immediately said yes. What was it? A three day event, “Inaugural Grand Rounds,” launching a completely redesigned curriculum at RUMC – redesigned with patients participating in the process. Yes, patients – people with no medical experience – except as “the ultimate stakeholders”; as patients, helping guide how we teach students.
The headline above is an extraordinary statement, but after 450 speeches and policy meetings, I’ve heard a lot of discussions about healthcare (especially its future), a lot of predictions, and a lot of attempts to explain the past, and the new book My Health: Upgraded (Amazon) stands out as the best explanation of the future that I’ve seen.
I myself never met “Doc Tom” Ferguson, the founder of the e-patient movement, but I’ve looked back at the vision he published and how it’s come true – and I’ve thought about why, a lot. This new book by 30 year old Bertalan “Berci” Meskó MD, PhD is in the same league. (Disclaimer: having never met Tom, I’m talking about the vision as he expressed it in his writings, which is all I have to go on.)
Happily, the BMJ (formerly British Medical Journal) liked the following review well enough that they published it on the BMJ blog. Below is that text, slightly modified.
“My Health: Upgraded”
is a clear vision from
a young futurist
In my work to understand how medicine saved me from Stage IV renal cell carcinoma in 2007, yet so often falls catastrophically short, I’ve looked for causes of both success and shortfall. More than anything, I’ve seen that “the progress of progress” depends on whether we correctly see, or fail to see, the latest and most important new patterns that alter what’s possible and what direction we should head in. Continue reading →
I’d love to see this coverage taken to the next level. The text and the bar chart talk about the crazy variation from city to city – an angioplasty costs four times as much in Sacramento as in Birmingham – but I know lots of people who just shrug and think “Well, Sacramento must be more expensive.” The thing that really gets savvy consumers going is when the same thing costs wildly more in the same city.
Like, how about if getting a tooth filled costs five times more in New York City, depending on where you go? Or a vasectomy costs eight times more? Or an MRI costs 3x more? Or a mammogram costs twelve times more? Or a walk-in doctor visit costs seventeen times more?? All within one city?
The company that’s working to publish THAT kind of “secret malarkey,” as I called it in the interview, is Clear Health Costs. (Disclosure: founder Jeanne Pinder has become a friend, because I love what she’s slaved for years to create – I wish I had it in my neighborhood!)
Here’s a screen capture of their home page. Click it to go look for yourself.
So I think it’s up to us, as consumers, to say “Cut the crap, you guys! What is this going to cost?? Do not tell me you don’t know! You’re better than that!”
It’s not just about ratting out those who overcharge. We as consumers need to reward the ones who are working hard to do a good job at a good price. We can only do that if prices are brought out into the daylight – city by city, within the city, as Clear Health Costs is slaving to do.
Be empowered – ask for what you want, for what we need! It’s so important for us, the people with a medical need, to be able to reward the providers who are working hard to do a good job.
Tuesday morning’s event was a breakfast meeting with the Commonwealth North policy forum. Local TV station KTBY sent reporter Caroline Flinn, who put together a pretty spectacular spot-on three-minute segment about the event, and tying it to the upcoming free public event Friday night.
For regular readers of this blog there’s nothing new here, except that this is a chance to see and hear some faces and voices of members of the movement, for instance Deb Kiley N.P., PhD, the organizer and co-ringleader of this whole trip along with Kathe Bouche and others in attendance. Watch for the cancer patient who took matters into his own hands after the docs said all they could do for his cancer was palliative care.
Did I mention that I love seeing this movement spread and take root everywhere??
Photo by Zack DeClerck for USA Today. (Click to link to article)
I was interviewed recently by USA Today reporter Laura Ungar of the Louisville Courier-Journal. The story ran Monday 9/14 in that paper and will be in the national USA Today soon. (I expected it on Tuesday 9/15 but it’s not there.)
Regular readers of this blog are familiar with my years-long series of posts Let Patients Help: Cost-Cutting Edition, especially my efforts to shop responsibly to get a skin cancer treated. If you’re not familiar with it, and you have the stomach for it, sit back with a cup of your favorite beverage and start digging. (For a shorter version, read the final post, which is pretty unsettling.)
Why do I ask you to read it? Because I believe this is important to the future of health(care) in America. We must put an end to this crap. Providers, give us the facts! Tell us what things will cost, so we can decide what’s important to us!
Good providers who are trying to do a good job at a good price simply cannot win our business in an environment that, 9 years after the original article in Health Affairs, is still best described as that article’s title did: “Chaos behind a veil of secrecy.”
Can you believe that this situation is tolerated and nobody is getting busted? As I told Laura in the interview:
There can be no explanation other than some secret malarkey going on. …
I feel disempowered and disrespected, because aside from the incredible cost crunch we’re all experiencing, it’s a downright sin that my family can’t readily find out what the options are and what the costs are.
Continuing this monthly series: here’s this month’s update on travels, new bookings, and writings.
Access to our families’ health records:
The time for action is coming
The best in healthcare of course depends on access to all useful information, but HHS has reported to Congress that certain parties are “knowingly interfering” with the flow of families’ health records. Two posts:
Talk about it with friends, too – it’s getting to be “Paul Revere” time. Don’t wait til it’s your family member who’s in a crisis.
Over on Medium, I commentedon a post by entrepreneur Steve Kiernan about this issue, saying:
“Who out there wants to present an argument why families should be kept apart from their people’s health data? … Is there any ethical or moral argument for no spigots?”