Tomorrow (Thursday Feb 21) at 2pm ET, for the second time I’ll be presenting the concept for my new book, Superpatients: Patients who extend science when all other options are gone. The first time was December, in a private webinar for the QI [quality improvement] Connect team in Scotland. Registration is open to the public here but that’s optional – at bottom I’ll paste in how you can join it at showtime, without registration. In any case it’s free and no obligation.[Read more…]
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?”
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
- 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.
- 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.
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.
- 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.
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!
- 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.
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
West Wing replay: Surgeon General Vivek Murthy said something recently that had Aaron Carroll reflect on the West Wing over on The Incidental Economist blog. “When real life imitates ‘The West Wing,’ Surgeon General edition”
Less is more, health IT edition: On the HL7 Standards blog, Michelle Ronan Noteboom looks at the idea that too much is way too much when it comes to several things, including portals and medical treatment. “When Less Is More in Health IT”
You can get it at Lowe’s: Not hardware, although they do certainly have plenty of that. In this piece on the Health Affairs blog, Bob Ihrie and Alan Spiro take a look at how Lowe’s retooled their employee health insurance coverage with an eye on behavioral economics, trust, and relationship dynamics. “Engaging Health Care Consumers: the Lowe’s Experience”
Tattoo you: I (Casey) have been making the health IT event rounds lately as a patient voice on panels about health tech and patient engagement. Since I took a very out-there step related to my own health data, my appearance in the room can start some interesting conversations. An example, by Jim Tate in the HITECH Answers blog: “Patient Engagement: I Tattoo, Therefore I Am”
Lab coats – yes or no? A meta-analysis of the study data available on patient satisfaction scores and physician attire shows that patients are likely to rate a doctor who’s dressed professionally higher than one who isn’t. What’s your thinking there – would you prefer a tie (which can be an infection vector), or are scrubs OK with you? From Lena Weiner in HealthLeaders Media: “Physicians’ Attire Linked to Patient Satisfaction Rates”
From the This Will Never Get Old desk: A film director and his wife took to YouTube back in 2010 to illustrate the user experience when you’re a patient booking healthcare, setting that illustration in the context of air travel booking. The results were, and are, hilarious. The New Altons on YouTube: “If air travel worked like healthcare“