Sharing Data per Patient Preference – An analytical look at how patient preference -based data sharing might be operationalized. Thanks again, John. It is good to see posts about this part of the CMS rule that discuss how this can be done instead of how this cannot be done.
Posts Tagged ‘bidmc’
Sharing Data per Patient Preference: Ideas on implementing the CMS Rule from John Halamka, MD
January 18th, 2010 | Popularity: 3% 0 comments | Leave a replyNow Reading: Patients actually want their entire medical record
November 13th, 2009 | Popularity: 6% 9 comments
Ok, this article isn’t titled that either, it’s titled Insights for Internists: “I Want the Computer to Know Who I Am” and it continues to complement the stream of information from peer reviewed literature that is more or less confirming what people who use robust personal health records already know. I discussed the issue of imaging test results earlier, as you may have read. That article was published in the radiology literature, which is significant, this one is published in the internal medicine literature, which is also significant. When the producers of the content themselves (internists, radiologists) convey what their patients want from them, it’s a powerful adjunct to the patients doing this themselves (and frankly, they’ve been doing it for a really long time…).
This paper was written by a team at Beth Israel Deaconness Hospital, and encompasses data from patient and physician focus groups conducted in multiple cities in 2006-2007. They asked them about how they manage their health information and how they would ideally manage health information. Some of the more important points:
- They mostly do it – keep their own records – except for the college student group
- They want full access to all the information. They know about their legal right to see their record, and understand that as currently constructed, this legal right doesn’t grant them functional access (think “73 cents”).
- Privacy: “worries that appeared to fade rapidly in the face of the desire to have records fully available in emergency settings and with multiple and new providers.”
- “Strikingly, the 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
I both enjoy and get discouraged by reading this information because it should be more universalized than it is. But it will be. I’ll continue to invite the patient voice wherever I can, and continue to work with leading edge care systems (there are many) who take this information and innovate for patients.
With great thanks to the team at BIDMC and lots of nurses and physicians who are now asking the “why?” question about keeping things from patients. It reminds me of a letter I once composed to send to USA Today, that I never did, and through the magic of Mac OS X spotlight, I found it (and very quickly – amazing). Here’s what I wrote in 2005. Hmm..the passion didn’t fade.
In the USA Today article (“Prescription for Patients: E-mail”), the author felt from her experience that “patients could not be trusted not to abuse doctors time.” What we have known from the beginning is that patients can be trusted – they could always be trusted. And that’s the difference. We are supporting our patients’ trust in us, that we do not waste their time. Isn’t that what matters most?
Life as a Healthcare CIO: The FY10 HMS IT Operating Plan
August 27th, 2009 | Popularity: 2% 0 comments | Leave a reply- Life as a Healthcare CIO: The FY10 HMS IT Operating Plan – Thanks again to John Halamka, MD, for sharing the Harvard Medical School Information Technology Operating Plan, in the interest of serving as a benchmark to others, and being transparent within his own organization.
“We Will All be Patients Someday” – Health 2.0 meets Information Therapy, Boston, MA
April 27th, 2009 | Popularity: 27% 10 commentsI am back from the spring Health 2.0 Conference in Boston, MA, this time combined with Information Therapy, which in my opinion was both a great thing to do in terms of participants, and in terms of bridging the Health 1.0 and Health 2.0 worlds.
Photos below, click on any to enlarge
Some of my favorite health care leaders were in attendance of course, including Holly Potter, Kate Christensen, MD, Paulanne Balch, MD, Anna-Lisa Silvestre, Diane Gage Lofgren, James Hereford, ePatientDave, Trisha Torrey, Susannah Fox, Gilles Frydman, Dan Hoch, MD, Alan Greene, MD, Danny Sands, MD, Jay Parkinson, MD, Jane Sarashohn-Kahn, Lygeia Riccardi, as well was excellent co-hosts Matthew and Indu from Health 2.0, and Josh Seidman, from The Center for Information Therapy.
(Is this dangerous? Attempting to list all of your favorite people on a blog post? I suppose I could just link to my Twitter friends list – I hope everyone remembers what I said on stage about loving everyone and that you’ll add a comment if I’ve forgotten..)
My bias in coming to Health 2.0 is to look for connections and innovations for the established health care system, and I think the combination here supported that, beginning with a debate entitled, “Ix and Health 2.0 – Synergies and Tensions?” moderated by Jane Sarasohn-Kahn, probably one of the few humans alive who can moderate this many energetic people at once. Regardless of the outcome, though, the mere fact of the conversation is evidence that we all need each other, because when we are patients, we are going to need everything we can get to help us be successful.
The Patient Takes Center Stage, from the balcony
The moment of most impact for me was when I was on stage, following a short demonstration of
kp.org (see tomorrow’s post), when the topic of ePatientDave’s work with Google Health and Beth Israel Deaconness (well represented by Roni Zieger, MD, and John Halamka, MD) was mentioned ( start here if you want to get up to speed on this great story ) .
Here’s what happened : When the topic was first brought up, and there were a few audio problems, we heard “Speak up!” coming from the balcony on the right. I turned to fellow panelist and said, “Voice of the patient!” Next, as the discussion was unfolding, with Roni and John describing what they had done in partnership with Dave, I noticed this tweet on the monitor in front of me: “@epatientdave should be on stage too #health2con“.
As Dave got up, in the balcony, to begin talking about his experience, I reflected on the tweet and motioned him to come down, but instead, a really interesting thing happened. Dave stayed up on the balcony, microphone in hand, and spoke to the entire audience below. It was a perfect moment at a perfect time for me (and I think for the rest of the room), when a room of health care leaders looked up to our patients, physically as well as emotionally. I don’t know if there’s a photograph out there of this scene, but it’s gotta be priceless. Even though I could not find one for this post, I like this description of things from Susan Carr.
Running a hospital: Tipping point? (for trasparent health care orgs)
December 3rd, 2008 | Popularity: 21% 0 comments | Leave a replyThis is a thoughtful post from Paul Levy of the Running a Hospital Blog (and, of the Chief Executive’s office of Beth Israel Deaconess Medical Center) about achieving transparency among major health care institutions:
Running a hospital: Tipping point?
The post came because I was ribbing him a bit because of his quick mastery of the Twitter learning curve, and it goes beyond that to provide a bit of reflection.
I think I now take for granted that the BIDMC organization (through its reporting as well as through Paul and John Halamka’s blogs) is more transparent to its community. For example, I assume that if I want to download a strategic plan for a large Information Technology operation in health care, it will be available on John’s blog. I don’t know of another I.T. organization that I can download strategic plans to learn from. That’s differentiating for me, and I’ll go so far as to say that it’s probably differentiating for patients, too. I still believe that patients don’t expect us to be perfect, but they do expect us to learn from our mistakes quickly.
Delayed and Embargoed Results on PatientSite
October 4th, 2008 | Popularity: 15% 0 comments | Leave a reply- Delayed and Embargoed Results on PatientSite – Thanks to John Halamka, MD, again for opening the doors on his work at Caregroup's PatientSite. He details BIDMC's rules for sharing information with patients. I would probably argue for more liberal sharing of radiology and pathology, however, it's important that they are sharing this information routinely.
Running a hospital: The message you hope never to send
July 22nd, 2008 | Popularity: 22% 0 comments | Leave a replyRunning a hospital: The message you hope never to send
As with many stimulating blog postings, the comments are as interesting as the post itself. Kudos to Paul Levy for doing his best to handle this differently than is the norm in health care – that’s an important role for a CEO who wants to change health care for the better.
I’m particularly drawn to the comment(s) by Ray Poses, MD about doing a “5 Why’s” type exercise to see what is happening upstream (why are teams being pulled in so many different directions regularly) that causes protocols to be slipped.
I also think there’s an opportunity for BIDMC to bring in patients and families to own the solution together. What would care be like if there was a family member in the operating room during surgical prep (Medical College of Georgia does this)? Or if the family had access to the patient’s electronic medical record in real time while in the hospital? Preventing this for another patient may be less about “what” to do in the operating room, but “how” teams (that include patients and families) are involved in the design of the system.
Given the work BIDMC has been doing to be transparent and involve more, rather than less, people in designing and improving their care system, it seems that they’ll do their best for their patients this time, too.
Hoshin and S.M.A.R.T. goals; What incentivizes Medical Schools; A CIO that embraces Web2.0 (I approve)
February 21st, 2008 | Popularity: 47% 0 comments | Leave a replyFebruary 18th through February 19th:
- Graffletopia – Nice set of stencils for Mac users of diagramming software
- Lean Manufacturing Blog, Kaizen Articles and Advice | Gemba Panta Rei – Primer on Hoshin and SMART goals
- Life as a Healthcare CIO: Rapid Application Development with Facebook – Looking at innovative consumer technologies as an opportunity in the CIO role is a great thing. I’m a fan.
- Hooked: Ethics, Medicine, and Pharma: Institutional Conflicts of Interest Policies: Some Assembly Required – This tracks back to medical schools’ support of community health…
- Health Care Renewal: Medical Schools to Faculty: “Show Me the Money” – The contribution of medical education to fostering patient centered care is challenged by the current system.
History of Airline Marketing; Going Pharma-free for CME; Closed-Journal Publishing
February 21st, 2008 | Popularity: 43% 0 comments | Leave a replyFebruary 15th through February 16th:
The first few links are from the history of diversity in various industries’ and their impact on quality, affordability, and safety.
- “Fly Me” – TIME – National Airlines pleads innocence in 1971 to the “Fly Me” campaign despite flight attendant protests.
- Classic TV Commercial Jingles: Braniff presents “The Air Strip” – A commercial dubbed “outrageously sexist” for its portrayal of flight attendants.
- Coffee, Tea or Tails? – TIME – Article from 1974 about Continental’s “We Move our Tails For You” ad campaign
- Health Care Renewal: GE: We Bring More Conflicts (of Interest) to Light – An example of a purchaser that struggles with supporting an affordable care system, and supporting an un-affordable care system at the same time.
- No Pharma Funding | When Memorial Sloan-Kettering Cancer Center in New York City stopped accepting commercial support for its continuing medical education activities last January, many at the institution had their doubts that the program would survive – CME without industry support is possible. I would tend to favor events that are less fancy and have less bias.
- apophenia: open-access is the future: boycott locked-down academic journals – A more assertive argument around locked down journals.
- Running a hospital: You can take your $15 fee and … ! – I wonder how relevant peer review is in general. I am going to start a tag cloud on this and keep track.
White Paper – Patient-Centered Applications, Forrester on Health Plans and PHRs
December 28th, 2007 | Popularity: 33% 0 comments | Leave a replyPCHIT links for December 26th through December 27th:
- Early Experiences with Personal Health Records — Halamka et al. 15 (1): 1 — Journal of the American Medical Informatics Association – As reviewed here: http://www.tedeytan.com/2007/12/27/242/
- Patient-centered Applications: Use of Information Technology to Promote Disease Management and Wellness. A White Paper by the AMIA Knowledge in Motion Working Group — Demiris et al. 15 (1): 8 — Journal of the American Medical Informatics Association – Nice description of what we know/don’t know about PCHIT. However, given that the rest of the world uses IT in a more customer centric way, are we going to wait for research?
- PHRs: From Evolution To Revolution by Liz Boehm – Forrester Research – Interesting commentary on health plans, PHRs, and adoption. Are health plans ready?
