Archive for the ‘medical records’ Category

VA data glitch mimics MIT’s

March 4, 2010 · Filed Under medical records · 4 Comments

Bob Brewin writes today in NextGov that the VA discovered a glitch in a system interface that could display the wrong patient’s information under peak load circumstances. The VA handled it in an exemplary fashion: they immediately issued a safety alert and shut down the connection; the bug (a memory leak) has reportedly been fixed and the link will be live again Tuesday.

The glitch came to light when a doctor noticed that a female veteran had a prescription for erectile dysfunction. Hm. Read more

Testimony submitted to the Adoption/Certification Workgroup for its Feb 25 meeting

February 24, 2010 · Filed Under Why PM, medical records, policy issues, trends & principles · 8 Comments

As I’ve noted recently, this Thursday I’m on a stakeholder panel at a meeting of the Adoption/Certification Workgroup, which is part of the Federal Health IT Policy Committee.

As noted in my previous post, this is a busy day, and each of us gets only 5-7 minutes to speak, followed by Q&A. We submit our testimony in advance. Below is mine. Additional reference material:

Panelist questions here
Rob Koppel’s March 2009 JAMA article here
RealPlayer webcast recording Koppel’s December lecture about the article here
I was alarmed by what I learned in that webcast, and wrote about it here

Click for a PDF of the testimony I submitted.

Panelist questions for ONC’s 2/25 hearing on EHR patient safety issues

February 20, 2010 · Filed Under medical records, policy issues, positive patterns, reforming hc, trends & principles · 15 Comments

I wrote last Wednesday about some background material for a panel I’ll be attending Thursday, as part of the government’s process to encourage adoption of electronic medical records. In the current administration all such discussions are wide open to the public. Here are the questions we’ll be asked – I’d welcome your input. Read more

Proposal for a health data system to support urgent cancer patients and wounded warriors

February 19, 2010 · Filed Under e-pts resources, medical records, policy issues · 5 Comments

Denny Porter is executive-in-residence at the HIMSS Foundation, Institute for e-Health Policy. I met him in Washington last month at the eHealth Initiative’s annual conference, where I was on a panel. Great guy, and I love this proposal: a Federal Health Records Gateway to rapidly assemble all the health data about an urgently ill person from all the different Federal health data systems.

This column first appeared in Government Health IT on January 20, with the title “Plain Speaking on Health Data Access.”

For years a crisis has been brewing for many people who have become tangled up in a cyber-age web where healthcare records are being generated and maintained across an ever-broadening spectrum of healthcare delivery systems.

Two particular categories of patient are at the forefront of this crisis: those that have been diagnosed and told they have a terminal disease; and our country’s severely wounded military service members who are forced to transition from the Department of Defense to the Department of Veterans Affairs and out into the civilian healthcare system. Read more

What to do about “the cream of the crap”? ONC’s Adoption/Certification Workgroup meeting

February 18, 2010 · Filed Under hc's problem list, medical records, policy issues · 20 Comments

I’d like your help preparing thoughts and testimony for a policy meeting I’ve been invited to attend in Washington next week.

For these meetings, one needs to submit prepared remarks in advance, for the committee to digest in advance. And from what I’ve learned so far about this, there’s a lot to chew on, and people of all stripes (that’s you) can probably provide valuable input. At very least you can express yourself.

[Update 1 pm ET Thursday: I haven't been able to convert the recording mentioned below (which is in RealPlayer format) to display it here, but if you have RealPlayer installed you can play it yourself at http://real.welch.jhu.edu/ramgen/DHSI/Dec182009.rm. The slides are often out of sync with the audio but they catch up. Skip the first 9 minutes; the talk starts around 9:15 and goes 30 minutes, followed by 30 minutes of Q&A. The meat of it is in Dr. Koppel's talk, but the Q&A has more juice.]

My Father’s Medical Record Fiasco

January 2, 2010 · Filed Under Why PM, e-patient stories, general, medical records, policy issues, reforming hc · 29 Comments

Guest post by Alan Viars (@Aviars), CEO of Videntity Systems, Inc.

This past year my father required open heart surgery. This is a short article about the hurdles we (his family) encountered along the way. I’ve changed the names, because it is not my intention to embarrass particular hospitals or physicians. The issues I raise are systemic within the American healthcare apparatus. My objective is for you to get smart, get mad, and gain control of YOUR medical records. Read more

“The Quantified Patient”: my talk at “Quantified Self” show&tell, December 2009

December 27, 2009 · Filed Under Why PM, medical records, policy issues, trends & principles · 18 Comments

The Quantified Self (aka “QS”) is an informal San Francisco based group of people who are tracking one thing or another about their lives. (Could it exist anywhere else??) They have occasional “Show&Tell” meet-ups, with elbow-rubbing and a series of quick talks, 10-15 minutes each.

A few weeks ago I was in town for a talk at the northern California chapter of HIMSS on personal health records. Matthew Holt of Health 2.0 and The Health Care Blog told me QS was meeting that Monday, at the headquarters of Wired magazine.

I registered, and at the end it asked “You wanna present?” I never say no to that, though I didn’t know what I’d talk about.

Turns out host Gary Isaac Wolf was really interested in the little spreadsheet where I’d tracked my tumor sizes as my treatment progressed. :–) So in the context of “quantified self,” my topic became “the quantified patient.”

This is an informal production – audio from a camcorder (no mic) blended with my slides and a few other images. It was fun: a responsive, engaged audience. Thanks to the QS gang for the opportunity.

Related notes -

QS is a project of Wired’s Gary Isaac Wolf (Associate Editor) and Kevin Kelly (Founding Executive Editor). “KK,” as he’s known, is also on the advisory board of our Journal of Participatory Medicine.
KK’s videos on Vimeo include several others from that night. (Arg: the room was so full the camera had to shoot the speakers from the side – no slides!)
Among the other presenters that night:
- Spectacular e-patient and #getupandmove entrepreneur Jen McCabe
- Spectacular human and entrepreneur Esther Dyson, also on JoPM’s advisory board.

“Concern that sharing information with patients may cause sustained psychological distress is probably unfounded”

December 18, 2009 · Filed Under medical records, policy issues, reforming hc, trends & principles · 3 Comments

Cross-posted, with prolog, from the blog of Ted Eytan MD.

Yesterday the Institute for Healthcare Improvement’s “WIHI” series hosted a terrific webcast on the Open Notes project that’s being funded by the Robert Wood Johnson Foundation. (I need to dig up the link to the event’s archive, but I’m in a hurry.)

Speakers were Dr. Tom Delbanco of Beth Israel Deaconess Medical Center (a pioneer of patient access), Dr. Mary Merkel of Dartmouth-Hitchcock, and Bob Desaulniers, a patient of Dr. Merkel’s who lives in my own town, Nashua NH. Gotta go meet them!

Inevitably we revisited the hoary concerns about the horrible things that will happen if we see our health data. Dr. Delbanco cited a paper from the 1970s that advocated giving patients their medical records. And this morning Ted Eytan dug it out.

In this era of evidence-based medicine, isn’t it time for policy makers to look at this evidence?

Ted’s post:
Read more

What part of “Give us our damn data” do you not understand?

December 15, 2009 · Filed Under hc's problem list, medical records, policy issues, pt/doc co-care · 45 Comments

Yesterday I attended “How Access to Information Can Empower Patients and their Caregivers,” conducted by the Consumer Partnership for eHealth. CPeH is an alliance of stakeholder groups sponsored by the National Partnership for Women and Families. It has no web site of its own – it’s just a Partnership for Consumer eHealth (duh), convening to work on accomplishing good health through IT – especially health data.

An incredible moment (and I don’t say that often) happened after three physicians presented how their organizations are giving patients access to their medical records online. Their presentations were all encouraging. But during Q&A we got down to the nitty details, and comments from two physicians revealed a well-meaning attitude that I can only describe as protective and paternal:

Concern about emotional impact of bad news
Concern about the difficulty of interpreting some reports: “Even I can’t understand radiology reports sometimes.”

Regina Holliday was there – the “73 Cents” artist whose husband died of kidney cancer in June. Ted Eytan MD, an avid advocate of patient empowerment, asked her thoughts. With a cold clear look in her eye she said: Read more

From Ted Eytan’s blog: “Now Reading: Patients actually want their entire medical record”

November 15, 2009 · Filed Under e-pts resources, medical records, pt/doc co-care, trends & principles · 15 Comments

An important study just got my attention. Patients and clinicians in different cities were asked questions about concerns and preferences. Titled “Insights for Internists: ‘I Want the Computer to Know Who I Am’,” the study reports: (emphasis added)

Patients do keep their own medical records
They want access to everything in their record
Privacy worries “appeared to fade rapidly in the face of the desire to have records fully available in emergency settings and with multiple and new providers”
“health professionals professed far more concern about maintaining privacy than patients.”
They understand that their clinicians are busy/stressed, they want the information to supplement and make their (clinicians) work more efficient, not less

Boy do I wish we’d all known about this during the debates about meaningful use and medical records this summer! There was so much talk about “Well what do people want?” and “Won’t patients be overwhelmed? They won’t be able to understand it.”

And here’s the thing: it was published back in May, and the research was done THREE YEARS AGO, Nov. 2006 to Jan. 2007.

How’s that for a great example of the “lethal lag time” we talk about in the e-patient white paper? That’s the delay between when new knowledge comes into existence and when it’s made its way through the publication system, for use by decision-makers. Three years, in this case.

Thanks to the always magnificent, e-patient-minded Ted Eytan, MD for highlighting this study on his blog Friday.

A project of the