Atlantic Monthly: Electro-Shock Therapy

This quote caught my eye about General Motor’s approach to planning their next generation electric car:

Perhaps most audacious of all was a decision to allow unusual public access to the Volt program. The industry’s standard procedure is to develop new products, especially risky ones, out of sight, unveiling them only when proven. GM decided to do exactly the opposite. The PR department flung open the doors. GM executives discuss the program’s progress as publicly as if it were a bill in Congress. They show off photos of batteries under development. They promise to let reporters ride in test cars. They lead them through the labs and design centers and even into the wind tunnel. They run ads, for instance in this magazine, touting the Volt in the present tense, as if it already existed. By earlier this year, expectations were so high that President Bush was commending the car, and it had developed a national grassroots following. This article is itself a product of the fishbowl strategy.

GM is using the publicity to excite the public, of course. It is also using the publicity to push itself. “We thought it would be a motivating thing to do,” Wagoner says. “Certainly it gets everybody aligned”—not always easy in a giant corporation. And GM wants credit for trying, which it never received for the EV1. “If it fails,” Harris says of the Volt, “we want people to know exactly why it failed. It wasn’t lack of commitment or passion on our part; we hit a hard point we couldn’t get around.”

On the other hand, I don’t see a newer update than March, 2008 on the official Volt Web site. There are blogs about it though, and it’s possible that those publishers have good access to how things are going.

• Questions Are the Answer - AHRQ - Agency for Healthcare Research and Quality - supporting reduction of medical errors and accuracy - through patient involvement. Now the health system can meet patients half way by providing this information as part of every encounter.

May 15th through May 18th:

• CCR Product Compatibility List — AAFP Center for Health Information Technology - Adoption list of CCR - not up to date, but gives a glimpse of who has been involved.
• Montana Healthshare - Montana organization to use CCR to improve population health
• Solventus CEND/PHR - A reference implementation of a PHR using CCD, developed by Stephen Waldren, MD and David Kibbe, MD
• PDF Healthcare - A technology platform for enclosing historical documents - can contain a CCR
• SourceForge.net: CCR Acceleration Resources Project - The XSLT transofrm from XML -> HTML for CCR
• www.ccrstandard.com - Continuity of Care Record (CCR)Standard — Resource Site _uacct = “UA-2242673-1″; urchinTracker(); - Home base for CCR
• “I hope that some day you get your wish” - "Medicine has a 100% failure rate" - a discussion of physicians in information technology.
• The WETA Guide to Fine Dining | WETA TV 26 - A nice series on DC treasures
• The Health Care Blog: PODCAST/CONSUMERS/TECH: Interview with Joseph Kvedar, Partners’ Connected Health guru - Information about ConnectedHealth and the EMC pilot they are doing

Off the Record — Avoiding the Pitfalls of Going Electronic. 2008. [Accessed April 18, 2008].

Many of the readers of this blog have probably seen these articles in the New England Journal of Medicine this week:

1. Off the Record — Avoiding the Pitfalls of Going Electronic. 2008. [Accessed April 18, 2008].

2. Personally Controlled Online Health Data — The Next Big Thing in Medical Care? 2008. [Accessed April 18, 2008].

3. Tectonic Shifts in the Health Information Economy. 2008.

I was most interested in the Hartzband and Groopman article, which was concerned with “what does this mean for us?” The “us” referred to, though, is “us doctors.” What about “us, the people with a primary professional mission to serve the public.” (I still have this link on my mind, forwarded by Bob Moore from Group Health Cooperative). It’s possible that if patients had the same access to their electronic medical record that we do, that many of the problems expressed in the article would, as I like to say, be “self-healing.” If I know that the patient I am serving is going to read what I write, how will that impact my interest in making it accurate? (My guess: A lot)

See what you think, comments welcome of course.

Let me know what you think!

Ending Secrecy: Physician Makes Case for Full Disclosure of Health Records - iHealthBeat

This video was posted on the Mayo Clinic Health Policy Center Blog and includes the voices of people and their views on health care. There’s one in the middle that I found powerful. See if you agree.

I think more of the discussion should come from those receiving care in general, and I like that YouTube and Web2.0 in general is making that a reality.

There’s an associated slide presentation with data about patient access, and I liked the wording of the question, which was “Patients should be able to obtain accurate and complete information on their own health conditions so they can actively participate in making treatment decisions.” 79 percent said this was Very/Extremely important.

Veterans Affairs Medical Center, Washington

Veterans Affairs Medical Center, Washington

I was fortunate to spend time with Hank Rappaport, MD, the principle PM for the Microsoft Azyxxi Team, to fill a few big gaps in my EHR knowledge recently. Hank is a critical care specialist and has extensive experience building and maintaining electronic health records within the Department of Veterans Affairs, and now will do the same as a leader at Microsoft.

I sought Hank out originally because I wanted to learn more about what the Department of Veteran’s Affairs is doing with patient access to their highly regarded electronic health record. The Washington, DC, VA Hospital was a pilot site for the MyHealthEVet program, which allows those served in this system access to their medical records online. What’s special about the pilot sites is that they allow patients access to the entire record, without any filtering. This includes progress notes. More on that later.

Hank simulated access to both systems for me to get a sense of each systems’ strengths. Azyxxi was actually born at Washington Hospital Center, where Hank showed it to me, and is an excellent aggregator of clinical and other data, in a very accessible way. It seems to fill a niche that some electronic health records lack, which is a population view of data. The heritage of Azyxxi was the emergency room; at the same time, the utility is very relevant to primary care. With Microsoft supporting its future development, it should continue to add to innovation in health information technology. Of course, wearing my patient-centered hat, I thought there could be very interesting applications of this tool for patient access.

Following the tour in Washington Hospital Center, we walked across the way to the VA Washington to look at a simulated view of CPRS. The system is of course very capable (it lives up to its stellar reputation), specifically in the areas of order entry and decision support. It’s able to capture structured and unstructured text data, for example in progress notes. Like Azyxxi, I think there are rich areas for expansion for the system. The capabilities of this development team are different, though, and there are some changes being made in the way that the VA manages its health information technology.

There is currently not much interaction between the physician / staff view of the medical record and the patient view. However, it’s remarkable that patients have full access to their entire medical record, and has Hank indicated to me, this has not been a problem. I understand that the production (non-pilot) versions of MyHealthEVet do not have full patient access in them. In the meantime, I think the experience here in Washington deserves further attention in terms of its innovation.

I appreciate the value of the experience of seeing these two very competent systems a little closer.

Now, on to California and Heatlh2.0 to see some other cool stuff up close!

Peter Kirk, Ingrid Kirk, and Linda J Kristjanson, “What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study,” BMJ 328, no. 7452 (June 5, 2004): 1343.

Connie Ulrich and Christine Grady, “Beneficent Deception: Whose Best Interests Are We Serving?,” The American Journal of Bioethics 4, no. 4 (2004): 76.

Since I have been writing and discussing the topic of transparency lately (specifically with regard to patient medical records), these two articles came to my attention following a discussion that occurred after my presentation at Johns Hopkins Medicine. We talked about when and how we inform patients about aspects of their care, and what the conditions might be for “beneficient deception.”

The first article, which deals with communication between care teams and patients with terminal diagnoses, talks about the importance of good communication not just at prognosis, but throughout the course of treatment. This quote caught my eye:

Many participants reported dissatisfaction with the communication process, especially at disclosure of the initial diagnosis. Six attributes were identified to be important in communicating information: playing it straight, staying the course, giving time, showing you care, making it clear, and pacing information.

We put a high price on the accuracy and compassion that should come with an initial diagnosis, clearly. In the work I am doing, it becomes more and more likely that this information may come in an asynchronous fashion, i.e. the patient may see the result at the same time, or even before their doctor does. In discussions to date, it has seemed that the focus has been on this custom - “doctor gets the information before the patient.” I think the focus instead should be on the factors cited above and our ability to “enhance decision making and keep control.” It’s not clear that the current custom absolutely supports that.

The second article is about the concept of “beneficient deception.” The context, though, is not exactly what I was thinking of, but I am citing it here anyway. It refers to the idea that a physician may adjust or misrepresent a diagnosis to ensure coverage for treatment. In the patient-physician communication world, my assumption is that it might be used to provide hope and a sense of control. I am tempted to agree with the authors of this article, that I find this hard to justify in the long term. Instead, I think about the physician leadership role in making this activity unnecessary. Our patients can guide us on the best way to be accurate and direct, and I think we will all benefit from these conversations.

Of course, your comments are welcome.

• Health IT Pioneer Calls for Changes in Federal Health IT Strategy - iHealthBeat - More changes requested in federal involvement around Health IT
• JAY PARKINSON + MD + MPH on Carol - Jay says it isn’t going to work. I’m not sure it will either as I think about what Apple had to do to create the iPhone. I found the CEO’s ideas compelling. We should start with what’s best for those we serve and figure out a way to make it work.
• ChangeThis Newsletter: 42.05 Ideaicide: How To Avoid It And Get What You Want by Alan Parr and Karen Ansbaugh - I would call this a nice primer on “Nemawashi” - or conversations around the office to get ideas off the ground.
• A Food Fight Over Calorie Counts - Interested more in the approach to sharing information than the issue of calorie counts (per se) - that “consumer confusion” is used as the reason to not provide information.
• Chapter 70.02 RCW: Medical records ? health care information access and disclosure - Background information; Transparency Law in Washington State
• Forrester?s Top Health-IT Predictions for 2008 ? Digital Healthcare and Productivity - Clinical analytics, EHRs gain a greater toehold, RHIOs will take a little longer. My experience in the field seems to resonate.
• The Health 2.0 Blog: Carol aims to disrupt the health care market by Matthew Holt - There’s that “d” word again, in reference to Carol.com. Can they do it? If we think about creating patient-centered HIT systems, why wouldn’t we include cost information as part of the Information part of HIT?