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?”
AeHN is sponsor of the public event. Click to visit the event page
In my experience nurses often “get it” about patient engagement, which I’d bet (from my own personal experience) can be traced back to the nature of their work: it starts with engaging with the patient, in a caring-based relationship. (Of course I love great doctors too! Here, I’m talking about nursing.)
So it’s not a surprise that one of my most rousing ovations ever (standing O from 4,000+) was from nurse practitioners at their annual convention in Nashville last year. One of the key forces behind that engagement was Deb Kiley DNP, ANP, FAANP, of Anchorage, and she believes in it so much she went back and has been engaging people in the idea in her state. Her intense, committed approach to this work reminds me of Martin Luther King’s famous line “the fierce urgency of Now” in his I Have a Dream speech, which he delivered 52 years ago last week.
Click to go to the original blog post and DONATE! Honor our pioneers and be one yourself! Stand for what you stand for.
Remember my post the other day about Marilla Ricker, the New Hampshire woman who in 1910 tried to become governor? (Click the image or click here to go there.) The first well known suffragist in the state? We’re raising funds to have her portrait painted and hung in the State House, to honor this pioneer of new thinking.
On a related note, in the US today is Women’s Equality Day – proclaimed each year since 1972 by the President to commemorate the anniversary of the 19th Amendment. Here’s the Joint Resolution of Congress creating the day: (emphasis added)
WHEREAS, the women of the United States have been treated as second-class citizens and have not been entitled the full rights and privileges, public or private, legal or institutional, which are available to male citizens of the United States; and
WHEREAS, the women of the United States have united to assure that these rights and privileges are available to all citizens equally regardless of sex;
WHEREAS, the women of the United States have designated August 26, the anniversary date of the passage of the Nineteenth Amendment, as symbol of the continued fight for equal rights: and
WHEREAS, the women of United States are to be commended and supported in their organizations and activities,
NOW, THEREFORE, BE IT RESOLVED, the Senate and House of Representatives of the United States of America in Congress assembled, that August 26 of each year is designated as “Women’s Equality Day,” and the President is authorized and requested to issue a proclamation annually in commemoration of that day in 1920, on which the women of America were first given the right to vote, and that day in 1970, on which a nationwide demonstration for women’s rights took place.
We all know this social change is not complete, so let’s keep at it. Remember the work suffragists were doing 100 years ago and long before that. And please click and donate a few to remember Ms. Ricker.
I’m making a career out of changing the culture of healthcare and I want your help on another cause: honoring a pioneer of women’s rights in my state, New Hampshire.
A couple of weeks ago on New Hampshire Public Radio I heard this segment (text and five minute audio), about Marilla Ricker, who said this – in 1910:
“I’m running for Governor in order to get people in the habit of thinking of women as Governors… People have to think about a thing for several centuries before they can get acclimated to the idea. I want to start the ball a’rolling.”
Not unlike our efforts to have healthcare think of patients as valid contributors in participatory medicine, right? It seems to take forever! But Ricker couldn’t be governor; heck, she couldn’t even vote.
My state’s League of Women Voters and Women’s Bar Association have legislative approval to have a portrait of Ricker painted and hung in the State House – but New Hampshire being New Hampshire, permission is just permission, and they have to raise the $10,000 themselves. They’re more than halfway there – less than $5,000 to go.
HEY GUYS: Why is it that only two women’s groups are honoring this pioneer of fixing a massive cultural mistake??
Next in a series of very informal e-patient request blog posts, which feed the equally informal patient communities page. If you haven’t browsed the series you might find it interesting to see the kind of information people exchange for some conditions … and for others, we got nothing. Welcome to the internet!
This request is from e-patient Brenda Denzler, shown here in (characteristically) two comic settings. She’s seeking help for an issue that’s been with her for her whole life.
The doctor she mentions is Ryan Madanick @RyanMadanickMD, whom I’ve met on the conference circuit (particularly at Mayo social media) and online!
She sent this email. (In a comment I brought up EMDR as a trauma treatment, but I don’t know a lot, and besides, I’d like to hear more about other child medical traumas.)
My gastroenterologist was impressed with my preparation as a patient of his and referred me to your site. I’m not sure what it means to be your “current or potential client” – but am taking a chance by contacting you this way, anyway. [I don’t take “clients.”]
In late 1958 and early 1959, I had two medical situations arise. I was 5 years old. Continue reading →
British Journal of Healthcare Computing (HIMSS Europe) Vox Pop posted a conversation with input from me, and from Rosamund Snow, Patient Editor at the BMJ, about the value that patients bring healthcare, and the ongoing efforts to build a sustainable framework for patient engagement.