e-Patient Dave

Power to the Patient!

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USA Today article on “secret malarkey” of healthcare pricing

Photo of USA Today article 9-21-2015The medical costs and price shopping story I wrote about last Tuesday appeared today in USA Today: Health care costs are a medical mystery. (Nice play on words – usually “medical mystery” is about diagnosing a disease, and this dysfunction sure could use some sleuthing!)

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.

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Great three minute KTBY news segment on this Alaska trip

Recently I posted about my tour of Alaska this week, and boy, is the local community taking to the e-patient message!

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??

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Article in USA Today soon with my opinion on costs, and online advice

Photo of e-Patient Dave
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.)

The subject is summed up perfectly by the headline: Wildly varied health costs a national mystery.

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.

Remedy: information!

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Writings and upcoming events – September

Open a medical record spigot imageContinuing 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:

  • Over on Medium, I commented on 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?”

New bookings:

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Alaska, here comes E! – including a community event in Anchorage, Sept. 18

Alaska eHealth Network logo
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.

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Women’s Equality Day – 95th birthday of the 19th amendment. Remember and support!

Screen capture of recent blog post
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.

Study up at the National Women’s History Project, too.