e-Patient Dave

Power to the Patient!

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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.

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Recognize this voice of social change: New Hampshire’s pioneer suffragist

Ricker full portrait

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??

Here’s what I want you to do. (“You” = any gender.)
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e-Patient request: resolve PTSD from early medical trauma?

Brenda kayaking for the first time
Brenda kayaking for the first time
Brenda Denzler with grandson
Brenda hamming it up with her grandson

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.  [Read more…]