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Democratizing Healthcare

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September 6, 2015 By Casey Quinlan Leave a Comment

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:

  • Take action: We need a Federal policy change – perhaps even a law – so I wrote a call to action: Open a Big DaM Spigot – Data About Me! As the post says, “All change starts with people asking.”
    • See the post for some simple immediate actions.
    • Talk about it with friends, too – it’s getting to be “Paul Revere” time. Don’t wait til it’s your family member who’s in a crisis.
  • 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…]

Filed Under: Business of Patient Engagement, Digests, Events, public speaking Tagged With: #gmdd, epatient, patient engagement Leave a Comment

August 10, 2015 By Casey Quinlan 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.

 

Filed Under: Business of Patient Engagement, Digests, Events, public speaking Tagged With: #gmdd, epatient, patient engagement Leave a Comment

July 15, 2015 By Casey Quinlan 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…]

Filed Under: Business of Patient Engagement, Digests, Events, public speaking Tagged With: #gmdd, epatient, participatory medicine, patient engagement, Society for Participatory Medicine, update Leave a Comment

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

 

Filed Under: Business of Patient Engagement, Digests, Events, public speaking Tagged With: #gmdd, epatient, participatory medicine, patient engagement, Society for Participatory Medicine, update 4 Comments

February 10, 2015 By Casey Quinlan Leave a Comment

Daily Digest: Speak up, stay safe + 6 Tuesday info-treats

Speak up, stay safe: How much do we love the fact that Consumer Reports is getting involved in the patient safety movement? We love it LOTS. One of the e-patients on the CU team, Kathy Day, is quoted in this piece that advises being proactive and persistent when you’re in the hospital. “The surprising way to stay safe in the hospital”

Physician, test thyself? Here’s a piece from the NY Times Well blog that asks if MDs are getting their own DNA tested. The author is an MD and bioethicist who breaks down the topic really well. “Doctor, Have You Had Your DNA Tested?”

Life is risk, act accordingly: Shared decision making, risk, and medicine. Dr. John Mandrola talks about doctors as “choice architects.” “The medical decision as a gamble”

Culture clash [WARNING: graphic topic]: The NY Times talks about a cultural norm in many countries, female genital mutilation, and how that’s showing up in western medical offices. “Effects of Ancient Custom Present New Challenge to U.S. Doctors”

Medicine as kindness: Einstein College of Medicine in New York CIty has a heartwarming story on their blog about Project Kindness. “For Patients, What Makes a Great Doctor?”

$500K+ for an EHR system, and they’re still faxing like it’s 1999: Both Dave and I are fierce advocates for frictionless data access for patients *and* clinical teams. We – all of us – still have a long way to go, sadly. “Doctors Find Barriers to Sharing Digital Medical Records”

Eat at your own risk: Dr. Brad Nieder, tagged as the Healthcare Humorist, with our Tuesday nugget of funny – since both Dave and I travel on the speaking circuit ourselves, we know from road food and regional diners and dives. “Americana in Los Angeles & Atlanta“

Filed Under: Digests Tagged With: #gmdd, Brad Nieder, Einstein College of Medicine, epatient, hospital safety, John Mandrola, Kathy Day, kindness, patient safety, shared decision making Leave a Comment

February 9, 2015 By Casey Quinlan Leave a Comment

Daily Digest: Is interop the Holy Grail?, science resisters, four more

Dave comment: I’m learning that Digest curator Casey has a taste for longer pieces than most internet articles. Take a peek at links that interest you. Here’s today’s selection.

The “holy grail” of frictionless data sharing: HITConsultant weighs in with an op-ed related to GMDD delivered, if you will. “Is Universal Health Data Platforms the “Holy Grail” of Interoperability?” (As we said last week, GMDD = Gimme My DaM Data, the cry of e-patients who want to have all their medical information. As the song says, “It’s all about me so it’s mine.”)

How to talk to science resisters: Here’s something from The Grist that tackles a tough issue: how to shift the thinking of parents who don’t want to vaccinate their kids. The Grist has been reporting on climate and environmental science since 1999, so they’re very familiar with the challenge of engaging with a “don’t confuse me with the facts” crowd: “How to talk to an anti-vaxxer”

In Let Patients Help I said “Information alone doesn’t change behavior,” which is very much on topic here. What can you say that will make any difference?

Caveat “precision”: “Precision medicine” is a hot topic, given President Obama’s announcement from the White House Jan. 20. (SPM president Nick Dawson was there – see his post on e-patients.net) on Jan. 30. Former SPM president Michael Millenson has been writing about healthcare for decades, and offers up a fact-based caution against letting genomic testing companies brand themselves as offering “precision medicine” without the science to support that claim. “Breast Cancer Tests Betray ‘Precision Medicine’ Branding”

Will healthcare spending drop or soar? Dr. Peter Ubel, MD and behavioral scientist, asks a question on Forbes that’s been rising in the cost-of-care circles where both Dave and I engage: is healthcare spending slowing, or “Is Healthcare Spending About To Accelerate?”

Questioning Medical Protocol: Randi Oster is an aerospace engineer, and the mom of a son with a chronic illness. In a post on the Engaging Patients blog, she shares a story that illustrates how the steep learning curves every e-patient navigates work best in tandem with an open mind and a sense of humor. “Questioning Protocol, a Family’s Perspective”

Funny Monday: I (Casey) am a longtime TV geek. Not just watching it, producing it. So I can weigh in with a professional POV, TV-wise and e-patient-wise, with a must-watch recommendation: HBO’s “Getting On,” set in a southern California extended-care facility. LA Weekly agrees with me. “HBO’s ‘Getting On’ Has What It Takes to Be a Truly Important Show”

 

Filed Under: Digests Tagged With: "Getting On", #gmdd, healthcare spending, HITConsultant, Michael Millenson, Peter Ubel, precision medicine, Questioning Protocol, Randi Oster, The Grist Leave a Comment

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