Chicago can get really really cold.

I found this out when I braved what I would call a challenging travel experience, along with several other HIT experts, to attend a new Joint Commission Public Policy Roundtable, addressing the creation of a nationally interconnected Health Information Technology System.

It was both worth the effort and I left welcoming the Joint Commission’s leadership and support. And since I originally hail from Phoenix, Arizona, I am apt to exaggerate the harshness of winter travel, anyway.

If you are not familiar with The Joint Commission, it is an organization with an important mission and positioned to “Help Health Care Organizations Help Patients.” I’ve encountered The Joint Commission’s work in my Informatics leadership role and it has definitely shaped improvements in quality, safety, and affordability of care. There is a lot of respect there.

Convening a roundtable like this is part of a larger process that includes an expert panel, the creation of a white paper, and conferences to influence policy. This roundtable covered a nice cross section of the HIT landscape, with sections on:

• Realizing the Benefits of HIT
• Creating Incentives to Spur HIT Adoption
• Overcoming Implementation Barriers
• Achieving Interoperability

Further, the attendees represented a core group of some of the most dedicated individuals to furthering a better health care system through technology. What was useful for me was the fact that most of the experts talking about HIT are from institutions which have viable PHR’s, or are working to build them. These are groups that understand the realistic promise in this area.

The most striking pieces of data to me were around adoption of HIT by physician practices, still in a range that we find disheartening - 14% by one definition, and by another, even lower at 4%. While patient centered HIT doesn’t require an EHR, it’s certainly easier to support it with an EHR. There was also an excellent overview by Dr. David Blumenthal from Massachusetts General Hospital of the different factors supportive of HIT adoption in different countries - everything from public support, to the presence of certified products, to peer support.

In terms of input I provided, it was to keep the patient at the center of the discussions, to promote patient adoption of HIT as well as physician adoption of HIT, and that transformation using HIT is really an element of an organization’s continuous improvement strategy. HIT doesn’t make this happen, but it makes improvement happen much more beneficially.

How did I leave this roundtable? Overall, very enthusiastically.

On the way to the airport from the meeting, I was able to share a ride with Don Detmer, MD, who is to me something of an Informatics hero, and a person who I believe has even more energy than I do. Don talked about the idea that there is a role for everyone to play, and we shouldn’t get seduced by the concept that there is one stakeholder responsible for forward movement. This is really important for us on the PCHIT initiative as we take our experience and put together some key attributes in our Personas work (coming soon). The other thing he did was recount some of his experience to me, which had a common thread throughout - the work of an inspired leader changed attitudes and then behavior to a different status quo.

I think we should look forward to the publication of the Joint Commission’s white paper on Creating a Nationally Interconnected Health Information Technology System and I am glad that this organization is applying resources to supporting our health system in this way.

PCHIT links for January 14th through January 29th:

• FreeMD? Your Virtual Doctor - A guided diagnostic tool for patients. There is limited record keeping that comes with this.
• California Could Be Health IT Model, Medicare Official Says - iHealthBeat - PHRs, they haven’t arrived.
• New York Insurers Launch Pilot To Test Medical Home Model - iHealthBeat - PHRs, have they arrived?

I am back from my Internet holiday (highly recommended!), which means a return to regular publishing on this blog. We are planning our next trip to New York City, publishing of our PCHIT Personas Special Report, and a final trip to California, stay tuned, and please add to the discussion. Comments are now turned back on for your interaction pleasure.

In the meantime, I ran across this commentary from Joerg Schwarz, the Director of Healthcare & Life Sciences at Sun Microsystems, about the value of the PHR in health care. My presentation at the Northern Calfornia HIMSS in December was useful in that I learned about the role of technology companies, both as experts in supporting a great customer experience online, and as purchasers, in promoting personal health records. Endorsements like Joerg’s below make a difference in fostering adoption across the industry.

Norcal HIMSS chapter - PHR Workshop : Joerg Schwarz on Health Care

Although most of our PCHIT research has focused on how clinicians and patients interact around care needs and technology, we spend some time talking with the people, companies and organizations that can play a PCHIT facilitation role in one way or another. Among these meetings, I’ve had a couple of conversations with and about HIT vendors about a hypothesis about EHR evolution, which goes something like this:

• Over the next few years, the functionality around different EHR products will converge in terms of the core clinical data management capabilities.
• Therefore, differentiation among EHR vendors will be on the basis of how well they create better and more seamless care management infrastructures for clinician-patient interaction and consumer engagement.

If that’s the case, it certainly would have important implications for the evolution of PCHIT applications.

Do others share this view?

An interesting study just published in the Journal of Medical Internet Research (JMIR) revealed two interesting findings.

1. Searching high-quality online resources improves consumers’ health knowledge; and
2. Consumers’ degree of “confidence” in their answers is not a good indicator of whether their answers are correct.

Neither finding surprises me. The first one is certainly intuitive, although some health care professionals have resisted this notion (notably, the now infamous Dr. Scott Haig).

The second is concerning from the perspective of consumers’ perceptions of the quality of online health information. The Pew Internet Project has documented that only a quarter of health Internet users even check the source most of the time, let alone really know whether the information they find is truly high quality.

Moreover, even though organizations that I greatly respect, such as the Medical Library Association, that provide guidelines to consumers about how to search for high-quality health information, empirical, peer-reviewed research (including some I have conducted myself) tells us that these guidelines do little to guide consumers to accurate and comprehensive health content.

That’s why we need a more rigorous strategy for guiding consumers to high-quality health content. It’s a system that can be built with a modest investment of resources.

I have finally experienced true family-centered care that is integrated with HIT tools. But it’s not been provided to me, my wife, or one of my three sons. The “patient” in this case is my golden retriever, Molly. Despite not having her signed HIPAA consent, I am going to share her family’s story.

Last summer, we finally got around to finding a new veterinarian for Molly–several months after moving. We chose Friendship Hospital for Animals largely because of its proximity to our house. The first appointment (for which I was not present) went fine, but I soon found more reasons to be impressed.

I soon realized that I could sign up for a pet portal. Although it’s true that Molly surf the Web much, she does have a form of “second-degree access” to the Internet via her caregivers (much like my human children).

I signed up and (after a few glitches) quickly had access to a highly functional PHR. It was pre-populated with all the information they had from her last visit and her vaccinations (which will be useful for me to print out the next time I have to leave her at the kennel). Moreover, there was a messaging function embedded into Molly’s PHR to allow for convenient electronic access to her clinicians whenever that was the most convenient form for me.

About a month later, I got a post card in the mail from Friendship–a well-tailored information prescription (Ix). On the cover was a picture of an adorable golden retriever and it told me: “Friendship Hospital for Animals has an important message for…Molly.” The “OVERDUE” stamp was an effective call to action, sparking me to open up the card.

Inside, it tells me: “Your wellness care is important to us and to your human companion.” It proceeded to inform me that Molly was overdue for a Lyme vaccine, and then further concisely explained why it was important. It also gave me information about the pet portal. On the back, there was another helpful wellness tip.

As it turned out, I questioned the evidence base around this particular recommendation because previous vets had recommended that we do the monthly applications to Molly’s fur instead. So I signed onto my pet portal and sent my vet a message. They soon responded (basically I was right in this case; it shows that they pre-packaged PHR program was not based on as solid an evidence base as they or I would like), and I moved on.

In mid-December, Molly developed an infection, so we called the vet on when we noticed it on the weekend and were able to schedule a Sunday morning visit. They took care of her, prescribed an oral and topical antibiotic in house, provided us on the spot with a collar/cone to keep her from scratching at it, and sent us home with a concise but clear after-visit summary about how to manage her infection. Furthermore, despite the fact that we were about to leave town for vacation for 10 days, I knew that–in case something went wrong–my answers to my concerns were just a click (or a phone call if I preferred) away.

It’s nice to know somebody in the family has 21st-century patient-centered care.

Woof!

I am going on a planned Internet holiday (more information is here), which will reduce the publishing schedule for this blog. Comments on previous posts are closed, but these will reopen in about a week. Thanks for reading!

The time we’ve been spending in the exam room shadowing clinicians and patients has been invaluable. But it’s also important that we observe how consumers are using HIT applications in their homes–after all, for most people, more than 99% of the time they are outside of traditional care delivery settings. For that reason, we have done things like shadowing consumers using PHRs in their homes and described our own experiences in using PHRs.

Of course, there are other tools besides PHRs that consumers use to manage their health. One striking example of the potential power of such tools is Brad’s Blog–a community support tool that friends of someone diagnosed with leukemia built.* In Brad’s case, his AML required a bone marrow transplant, about as serious a procedure as one can imagine. In his case, the electronic virtual social network was all the more important because he wasn’t allowed to see most visitors during the time that he was seriously immuno-compromised.

The blog served multiple purposes, and it was a great way to maintain and communicate information of all kinds. Undoubtedly, however, the greatest value was in creating an enormously powerful and inspiring source of social support for someone going through a great personal health struggle. What was amazing from following it over the last year was not only what it meant to him but also what it meant to his caregivers, family, and friends.

*Note: Brad said it was fine to discuss his blog here.

PDF: Key HIT Terms, Definitions and Characteristics (nahit.org)

The answer to the question, of course, is a lot. I sat in on a Definitions Forum held today in Washington, DC, to review work in progress around defining and characterizing key HIT terms. These include ones we use and see a lot: EHR, EMR, PHR, RHIO and HIE.

I sensed from the experience that there is potentially (potentially) much at stake in the definition of these terms, because definitions reflect culture. Indeed, Dr. Karen Bell, who opened the session stated that “culture eats technology for lunch.” In my own work, I have learned something similar - “culture eats strategy for lunch.”

Even though the acronym “PHR” is discussed at the beginning of the presentation, the discussion centered mostly on RHIO, HIE, and EHR, and I focused my attention mostly on the last acronym. What I appreciated about the emerging definition of EHR (see page 20 of the presentation) is that it is more aspirational than I have seen in the past. Still, there was some interesting discussion on two specific topics. One, the role of health plan as an actor in collecting and accessing data from an electronic health record. I stated in the discussion that this connection requires further discussion, in my opinion. At the current time, the definition says “collected from and accessible by all providers.”

I think a bigger issue is the role of the patient in the definition. It’s not there. This was brought up, and our moderator, Dr. David Longnecker from the Association of American Medical Colleges, posed an interesting question about this. He wondered if adding patient input to the EHR was similar to listserv’s he has operated where the moderated variety have been more successful than the unmoderated variety. This was a great time to add the experience of Group Health Cooperative, which has shown that patients are very respectful of their care team and of their health record, even now that they are allowed to write to it via the online health appraisal.

Comments (rather than definitions) are still being accepted through the Web site, at this link. The definitions are set to be completed on March 28, 2008.

PCHIT links for January 11th through January 13th:

• Racial Disparities in cancer therapy among (FFS) Medicare Beneficiaries - I think this is really “Racial Disparities …among Fee For Service Medicare Beneficiaries,” since HMO enrollment was excluded from the study. The data are concerning regardless, and raise the question of PCHIT in enhancing access to information in making

AHRQ-Funded Projects: Using an Electronic Personal Health Record to Empower Patients with Hypertension - Innovative grant to Medical College of Georgia to develop a PHR on the Cerner Platform

• The Big Opt Out » About the campaign - A campaign led by patients to opt out of NHS data sharing (UK)
• Kaiser Permanente EHR System Facts - KP HealthConnect Electronic Health Record Project - As the title says, a handy public status update of the KP HealthConnect Project
• Medical Care - Abstract: Volume 45(12) December 2007 p 1205-1209 Behind-the-Scenes of Patient-Centered Care: Content Analysis of Electronic Messaging Among Primary Care Clinic Providers and Staff. - Impressive: 47.8% of all messages between providers and staff dealt with the act of communicating and informing staff of attempts or achievements of acts of communication.
• SpringerLink - Journal Article - See the review on the pchit.org blog
• The Diabetes Patient Portal: Patient Perspectives on Structure and Delivery — Hess et al. 19 (2): 106 — Diabetes Spectrum - Early focus group testing from UPMC’s patient portal. Patients understand efficiency gains to the system and wonder why they should pay more, therefore.