e-Patient Dave

Power to the Patient!

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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:

[Read more…]

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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.

[Read more…]

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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.)
[Read more…]

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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…]

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Writings and upcoming events – August (corrected)

Click to visit "#HIT99" results post on EMR & HIPAA blog
Click to visit “#HIT99” results post on EMR & HIPAA blog

Some email subscribers got an unfinished draft earlier today. Sorry for any inconvenience!

Continuing this monthly series: here’s this month’s update on travels, events, and writings.

Social Media Recognition: ranked #17 on the “#HIT99” Health IT social media influencers list

Upcoming travels: 

  • August 13-14 D.C.: RWJF National Leader Summit on Integration of Behavioral Health & Primary Care. Participant.
  • August 30-Sept. 02, Nijmegen, Netherlands (Radboud University Medical Center):
  • September 10, Lancaster PA: Hospital & Healthsystem Association of Pennsylvania, 2015 Patient Safety & Quality Symposium. Speaker.
  • September 11-19: speaking tour of Alaska! Multiple events in Anchorage and Soldotna
  • September 23-27, Palo Alto: Medicine X | Ed. Speaker at Medicine X | Ed; attending the whole conference.

New confirmed travel plans:

  • October 29-30, Boston: Connected Health Symposium. Attending as SPM partner.
  • March 14, San Antonio: 2016 Parenteral Drug Association Annual  Meeting. Keynote.

Media mentions:

  • 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.