Business of Patient Engagement

August 10, 2015 By e-Patient Dave Leave a Comment

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):
- REshape Hacking Health 2015 hackathon. Judge
- “Grand Inaugural Rounds” at RadboudUMC Medical School. Speaker.
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:

The Center for Public Integrity published Obamacare research institute plans to spend $3.5 billion, but critics question its worth

ComputerWeekly picked up my “don’t tell patients not to Google” message in a piece by Claire McDonald titled “Stop telling patients not to Google – one man’s quest for joined-up healthcare” – McDonald also talks about the NHS’s efforts to give patients better digital access to their data as part of an ongoing engagement effort. The idea is spreading!

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.

July 15, 2015 By e-Patient Dave Leave a Comment

Writings and upcoming events – July 2015

Like last month, here’s this month’s update on travels, events, and articles (including a first for me!).

In my travels if you’re in the area and want to connect, contact me.

Writings:

Big news: my first article as lead author in a medical journal (right)! (In the world of medical journals, being listed as the first author is a big deal.) Open Visit Notes: A Patient’s Perspective and Expanding National Experience, in the Journal of Oncology Practice, with Jan Walker RN MBA. Thank you to the OpenNotes team for managing this!

Do you use online symptom checkers? Go for it but be wise: Last Friday I was interviewed by the Boston Globe (see below) to comment on a new BMJ article. It was such a stimulating topic I wrote a much-mentioned post about it on e-patients.net, and I hope to be writing more

Amazing Ginny’s amazing knee surgery: my post last week has been updated with amazing new videos of her moving around.
- That post has traveled: it got modified and posted on the much-read Glass Hospital blog, which was in turned picked up by the more-read MedPage Today update, and in turn caused a post about patient engagement on the Christ Church Charlotte nurse ministry blog.

Media mentions:
[Read more…]

June 12, 2015 By e-Patient Dave 4 Comments

Upcoming events & media – June 2015 edition

Clip art of newspaper boy — Public domain

This spring I had a couple of cases where people said “I wish I’d known you were coming – we could have had coffee!” (That’s always compelling to me…) So I’m going to try publishing a monthly update (more or less) of upcoming travels, newly added future events, and maybe a few other things. Short & sweet. Thank you to Casey Quinlan, a focused production machine if I ever saw one, for making this happen!

Underway now:

June 7-13, Lucerne, Switzerland: IKF’s annual Swiss tour. Multiple keynotes and private meetings.

Upcoming travels & webcasts

June 16-17, Chicago: NEHI’s National Healthcare Innovation Summit. Attending.
June 17, London (via web): The King’s Fund, Digital Health Days Congress. Speaker.
Link to come next week: June 26, 4:30 pm New York time, webcast: 20 minute speech “Being Heard as Possibility,” part of Rebel Jam, hosted by Rebels At Work, Corporate Rebels United and Change Agent Worldwide.
- I love this group! I first learned about them from Helen Bevan in 2013 and blogged about this movement on Forbes: The “Organizational Radical” Movement Comes To Medicine
June 29, London:
- Private corporate event
- BMJ patient panel gathering

Recently added events (stay tuned for details!)

Early September: Europe (to be announced)
Mid September: 10 day tour of Alaska! These people are getting it bigtime and spreading the word!
September 23-24: Medicine-X | Ed Bringing e-patient thinking to the medical education curriculum!
November 4, DC: American Psychological Association Presidential Innovation Summit
November 11, Sacramento: Transforming Healthcare Summit

My first-ever article in a clinical practice journal where I’m listed as First Author(!)

“Open Visit Notes: A Patient’s Perspective and Expanding National Experience,” in ASCO’s Journal of Oncology Practice. It’s open access (free), to allow reading and sharing by patients.
- Full text, or PDF of the print pages; article extract page here.
- Thank you to Beth Israel Deaconess OpenNotes team, and to the journal for making it open access.

Recent media mentions:

Book: The Digital Doctor: Hope,Hype, and Harm at the Dawn of Medicine’s Computer Age by Bob Wachter (April 2015)
May issue of ImproveDx: Newsletter of the Society to Improve Diagnosis in Medicine. In “Improving Communication of Test Results in a Changing World” by Susan Carr.
May 30, IntrepidNow: #TalkHIT with CTG – Dave deBronkart (ePatient Dave), The Original ePatient Advocate
May 28, AstraZeneca Health Connections: E-Patient Dave: “The Internet Brings Patients Together”
May 14, Mayo Clinic “In the Loop” “‘Healing Words’ Program Creates Space for Patients to Reflect and Clarify” about my interview on facing death with hope

May 3, 2015 By e-Patient Dave 1 Comment

Speaker Academy #22: Diary of an invited speaker :)

Update: I’ve edited the post’s headline because the original came across completely wrong. If you saw that one and were put off, rest assured – so was I when I saw it later!

The occasional Speaker Academy series, which started here, provides a bit of free advice (worth every penny) for patient voices who know how to give a good talk and want to make a business out of it. Today’s informative edition is a post by Edinburgh professor Geoffrey Pullam on the Chronicle of Higher Education‘s Lingua Franca blog: Diary of a Visiting Speaker.

He chronicles the 37 hour trip he took recently to deliver a two hour speech with Q&A, “over and above several days of lecture preparation. Don’t get me wrong, I like visiting new places and giving invited lectures, and this one was eminently worth doing. But being a visiting speaker is hard work.”

[Read more…]

January 26, 2015 By e-Patient Dave 8 Comments

NEHI Patient Engagement Fellowship

There are stages of any movement, and make no mistake, the shift to participatory medicine is a social movement, a full-bore cultural movement. It’s a change in roles, a change in expectations, a change in beliefs about the validity of a new party’s perspective – in this case, the patient’s.

I’m fond of pointing out milestones, the turning points in our movement. One was the founding of the Society for Participatory Medicine in 2009. Another was when patient voices started to be invited to speak about patient issues in Washington policy meetings. Another was when the Institute of Medicine said in 2012 that a cornerstone of medicine must be “Patient/Clinician Partnerships” with “Engaged, empowered patients.” Then the OpenNotes project, the BMJ editors announcing their Patient Advisory Panel, the founding of the Patient Voice Institute last year … all are signs of the movement maturing and gaining acceptance in the establishment.

Today I’m thrilled to announce a small but significant step in another dimension: NEHI, the Network for Excellence in Health Innovation, has offered me a Fellowship in Patient Engagement – a part time six-month project, advising them about patient perspectives.

Here’s NEHI’s vision map – click it to visit their site. And note what’s at the top of the circle: Evidence, Action, and Policy Impact. My kind of people!

Now the work starts. May this be the start of many such initiatives in many organizations that focus on improving healthcare!

For the record, here’s the 55 minute video of my keynote at NEHI’s 2013 annual meeting … as it says at the outset, this was a new approach: a new beginning and a new ending.

http://vimeo.com/76960537

Thank you, NEHI, for your vision, and let’s do this thing!

November 19, 2014 By e-Patient Dave 2 Comments

Speaker Academy #19 (getting paid), cont’d

Update Nov. 20: overnight I received a courteous and complete reply. The funds have now been sent, and my bank seems to have been part of the problem, since a month ago. It would have been useful to know that – without that information there was no way for me to help. I’ll update again as the situation proceeds.
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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.

In #16 (January) I said “For a small business, cash is king.” Then in June, #19 was titled: “What’s up with expense checks??” To a small business (like a patient starting a speaking business), this is no small issue, and any event that wants to say it’s patient-centered needs to see things from the patient’s point of view. In #19, citing a then-current overdue item, I said:

I’ve used my own methods (very specific communication) for months now, and it’s not working. So, starting tomorrow, I’ll do the blogging that I said (in #16) I’ve never had to do: I’m going to paste in the entire email thread from the current worst offender, with no names attached. And if the money hasn’t arrived by Friday, the names get added. (Their next scheduled check run is Thursday, and I’m sure they know how to use Fedex.)

All those past due items cleared up within a month, through diligent management of each item (by my assistant Kristin and me). That takes more time, costing my business extra resources – exactly as described in #16: they keep the money, I lose interest, and I also expend more to get what they owe me. Most definitely a case of one party not keeping their side of the deal.

But today I received one of the worst examples ever. [Read more…]