“Patient Engagement in Health IT” is live – my first professional C.E. course

screen capture of course web page

Click to visit the course web page

After a year of work in partnership with the University of Minnesota School of Nursing, I’m thrilled to announce that my first commercial, professional continuing education course is live:

Patient Engagement
in Health Information

An online C.N.E. course
at the University of Minnesota
School of Nursing

Register here.

From the course web page:

Target Audience:
Healthcare team members interested in learning to plan for and implement supportive actions for patient engagement and activation through the use of health information technology (IT).

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Patients are the ultimate stakeholder. HRO should partner with us!

hro_bannerLast month I posted that I’d be participating in the 8th international conference on High Reliability Organizing (HRO). Today I participated in a breakout session where the moderator decided to “flip” the session, and start with Q&A, making the whole session audience generated on the fly. Woohoo!

I threw together a set of slides, which I started to present as time ran out. Here’s the whole set. It’s not a speech – it’s a set of topics that just ends.

I learned a ton at this event, from people who’ve worked on preventing disasters in other industries (aviation, firefighting, nuclear energy, etc). I hope to say much much more later about what I learned – this presentation was to people in HRO who aren’t familiar with the “patient as partner” idea.

One major new buzzword I picked up is situational awareness. I know aviation and military people are familiar with it – you can’t possibly perform reliably (do the right thing) in a situation if you don’t know what the situation is. But somehow, almost everywhere in medicine, clinicians too often disregard what patients and family are trying to tell them. We need to transform this – all of us.

Here are the slides. This evening I tweaked the slides – I’d said “most” organizations when I meant “few.”

For more on the conference, here are the Twitter analytics and transcript. The hashtag is #HRO2014. (I was chatty yesterday but not today.)


“Patients + Providers + Technology = Engagement” (Guest post by Patti Brennan)

Patti Brennan

Patricia Flatley Brennan, PhD, RN, PhD – University of Wisconsin Madison, School of Engineering

This is a real pleasure – a guest post by Patti Brennan (@PattiFBrennan), one of the people I admire most in the world of improving healthcare through patient engagement. I first met her through Project HealthDesign, one of the best programs sponsored by the Robert Wood Johnson Foundation: “Rethinking the Power and Potential of Personal Health Records.” I’ve also shared a panel or two with her at industry events – not nearly enough to suit me, though. :-)

Last year Project HealthDesign completed. One of its key subject areas was “ODLs” – observations of daily living. Here she explains the idea and lists some exemplary work she’s seen.

This guest post (I added some boldfacing) is long overdue – I’m just too busy for my own good sometimes! Thanks for this honor, Patti.


Patients + Providers + Technology = Engagement

There’s a growing group of patient advocates, people like Hugo Campos or ‘our own’ Dave deBronkart (e-Patient Dave), who are calling for patients to be active and equal partners in their health—and that’s a goal that as a nurse I wholeheartedly support. At Project HealthDesign, we have worked to encourage two-way conversations between patients and clinicians, with both parties held in equal status. Clinicians are the trained experts in health care, but patients are the experts in their own lives and their own bodies. We believe that when both parties work together, more can be done to improve health care than either can do alone.

The key to forging these relationships and creating successful partnerships between patients and providers is technology.

Speaker Academy #17: “Your message did not fall on deaf ears.”

Erin Moore profile picture

This is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to speak on a subject but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

A great moment just happened, and I say “great” because it brings together two big factors in the Speaker Academy series here:

  • If patient voices are a cornerstone of the future of medicine (as the Institute of Medicine says), they need to be actively supported in their participation. Otherwise, the future will be built on whatever scraps people find for free.

Well, Speaker Academy pal Erin Moore just knocked one out of the park. Speaking last week at two events in DC (for free), she had an occasion arise where she spoke effectively – in fact I’d say she knocked it out of the park!

Here’s a cross-post of her news, with permission, from her blog 66 Roses. Change agents, take note.
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Web keynote: “Successful Engagement Strategies for your ACO”

This was Thursday, march 20. The archive will be available for viewing online, before too long.
Krames webinar screen grab Ma

Successful Engagement Strategies
for Your ACO

It’s sponsored by Krames Staywell (Twitter @KramesStayWell), a visionary patient engagement company. Why do I say visionary? Because they were the first company to ever hire me for an event. It was a private client meeting in Manhattan, June 2010.

I’ve long been saying that patient engagement will someday be seen as a real business with both commercial and social value; Krames Staywell was the first to act on it, and now we’re doing it again – in a world that’s vastly changed.

Recent events and postings, March 14

Corrected Saturday afternoon: “Stanford” should have been “UCSF” (University of California, San Francisco)

Boy, is the pot starting to bubble. Word about participatory medicine is spreading, and there are signs that it’s starting to follow the trajectory of other cultural movements. News and posts elsewhere in the past week:

e-Patients.net: Surgeon: “Participatory Medicine encourages partnership between patient and provider”

There’s a stage in every movement where it starts to get discovered by people in the establishment who weren’t among the founders. And there’s another stage, when that person’s discovery spreads into mainstream media. That happened Thursday, in Richmond VA, when a cardiac surgeon wrote a piece with the title above, including this:

Today, there is a movement afoot — one that is welcomed by me and many of my colleagues. It’s a change that I hope will become the norm when it comes to the physician-patient relationship. It’s all about partnerships between patient and provider.

To hear a surgeon say that – one who just met us recently, at last fall’s Medicine X conference – is hot stuff. It’s especially important that none of the society’s founders were involved – the discussion now has a life of its own.

e-Patients.net: Words Matter – Let’s Reconsider the Term “e-Patient”

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How much should/could this pathology cost? (Skin cancer biopsies)

I’m going to START with three clarifications, because sometimes people don’t read footnotes. :-)  Read before proceeding.

  • I’m NOT saying there’s anything wrong here – don’t anyone assume that every time I blog, it’s a warpath. :)  I’m just asking a question. My guiding principle on medical treatments and costs is that people should know what their options are, so I’m presenting my situation and asking.
  • I’m also NOT asking for treatment advice – I’m only asking about costs and whether it sometimes makes sense to get pathology done elsewhere. (We’ve already discussed treatments and I’m satisfied.)
  • As I’ve said before, I’m NOT recommending that anyone else act as I choose to.

Also, regular readers know that as a former cancer patient in New Hampshire, my insurance options were limited, and I chose $10,000 deductible, so all of this will come out of my pocket. As I’ve blogged many times before, this turns out to be a nifty way to discover how the money actually flows in American healthcare, which is usually really hard to find out.

Below is the pathology report from some biopsies I got in January. The bill is $416 list price; after the usual insurance discount, my balance due is $312.

My questions:
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e-Patient request: colon cancer communities

Regular readers know that I sometimes will post an e-patient request, and some of those answers go into my list of patient communities on this site. Here’s one I can’t believe I haven’t written up, because I know there are lots of them!  But that’s probably why nobody’s ever asked, here.

Colon cancer

An audience member from overseas writes saying that a relative has been suddenly diagnosed with colon cancer, with poor prognosis.  I went to my Communities page and found nothing. That’s crazy because I know there are lots of communities for colon-related conditions. (My page has several for Crohn’s and colitis, but not colon cancer.)  Who are you, out there??

My memory is notoriously bad so I apologize for not remembering you all. Off the top of my head I remember:

Who else??  As always, answers will be recorded on the Communities page, for others to find. Thanks!


A Man of the Year in “Shapers & Influencers”? I’ll take it…

My H.I.T. Men of the Year awardMonday night at the gigantic (37,000 people) HIMSS conference in Orlando (Health Information Management Systems Society), Healthcare IT News presented its 5th annual “H.I.T. Men & Women of the Year” awards. I was one of the nine nominees in the “Shapers & Influencers” category, and I was thrilled to learn that I was one of the three winners! Announcement and photo here.

Even better, famed art activist Regina Holliday was another. So our Society for Participatory Medicine nearly swept the category. That’s a huge acknowledgement in a Society that still barely knows patients exist – not a single patient was invited to speak in the big hall.

My thanks to Healthcare IT News, and to emids, the company who founded the award.

Let Patients Help – now available in Spanish: “¡Dejad que los pacientes ayuden!”

513d+SE7-hL._I’m thrilled to announce that my book Let Patients Help is now available for sale, in paperback or Kindle, in Spanish!

The project was managed by Luis Fernandez Luque (@LuisLuque), longtime member of the Society for Participatory Medicine and organizer of my tour of the northeast part of Spain two years ago. This man sees the future and makes things happen.

Please spread the word to the whole Spanish speaking world. ¡Dejad que los pacientes ayuden!

Thanks too to the other team members whose work made this possible:
Jaime Cubero Guerrero (Editor)
Miguel Tovar (Editor)
Elena Sainz (Editor)
Patrick Partridge (Translator)