PCHIT links for December 13th:

• New E-primer ? The Need to Know: Addressing Concerns about Privacy and Personal Health Records - Quote:”Project HealthDesign teams have found that while confidentiality is important to end users, they are often willing to share personal information in exchange for specific benefits and functions? “
• eCWusers.com :: An Independent Users Group for eClinicalWorks - A user forum that is publicly hosted by users of the eClinicalWorks EHR
• Create a personal MedActionPlan? for every patient - Interesting approach to guiding patients on medication regimens
• EMR - Electronic Medical Records and Practice Management for Clinical Practices by eClinicalWorks - eClinicalWorks Patient Portal information
• HIMSS - National Capital Area - Forum on focusing on the consumer in health care, January 17, 2008

Last week, Josh and I went to visit the headquarters of the National Partnership for Women and Families, hosted by Deven McGraw, the organization’s Chief Operating Officer. Deven also happens to be part of PCHIT’s Advisory Group.

We were stimulated to learn more about the National Partnership because of Deven’s experience in health policy and consumer issues in health information technology. For me, I really enjoy learning about the passion and energy that creates organizations dedicated to the empowerment of people. That’s the same energy that fosters patient-centered health care and the technology that supports it.

Deven showed us some of the landmark legislation that the organization’s founders helped enact, including the Pregnancy Discrimination Act, and the Family Medical Leave Act. These protections are ones that we now take for granted; seeing them on a wall is a reminder of the work it took to make them part of our society.

Josh and I then discussed some of our experiences to date about PCHIT, and we talked about factors supporting the adoption (or lack) of Personal Health Records, especially the privacy component. The conversation was a really good one for me, because I come from a health care organization with a very visible commitment to privacy and consumer empowerment.

Deven spoke of her own experience with a PHR offered by her health plan. She indicated that she was not able to sign up to use it, and even counseled her colleagues accordingly, because of ambiguous language in the invitation from the health plan about the use of data entered into the PHR. It says something significant when one of the strongest proponents of of the use of a PHR cannot use the one offered to her by her own health plan.

After our conversation I went back and re-read the privacy policy of Group Health Cooperative’s MyGroupHealth web site. It says:

(ghc.org privacy policy)Group Health Cooperative does not make underwriting or insurance coverage decisions based on our members’ use of the MyGroupHealth site. We do not monitor individual use of health information resources, such as Healthwise® Knowledgebase* or Group Health Cooperative health information pages.

I recall this language as being present since the site was launched in 2000. It has not changed since then. This was a moment of reflection as people have asked, “How has Group Health achieved significant adoption by patients?” We haven’t really seen anything but high adoption. Maybe that’s because of both the policy and the very compelling nature of a connection to the patient’s actual care team, which is what MyGroupHealth offers. I hadn’t really put the two together as requirements before our talk with Deven.

Is it possible that language like this (backed up with behavior to support it) in PHR invitations and privacy notices would improve adoption? And by how much?

We learned in our visit that up to 32 individuals in the National Partnership Office did not adopt a PHR because of this issue.

At the same time, though, Deven and the National Partnership are working to find solutions, through service on the Confidentiality, Privacy, and Security Workgroup of the American Health Information Community. It also houses the Health Information Technology Consumer Principles, which serves as a guide for others.

With thanks to Deven McGraw and the National Partnership for Women and Families for demonstrating, as with the legislation on the wall, what I/we take for granted in one environment is something that still needs to be worked toward for all of society.

If readers have thoughts on their own experiences signing up for PHRs and comments on the invitations they’ve received, feel free to post them here.

Presentation: Office of the National Coordinator Shop Floor Tour, Ted Eytan, MD

These were the words of Mark Snyder, MD, Associate Medical Director, Information Technology, Mid-Atlantic Permanente Medical Group, as he demonstrated a new paradigm of information sharing using a simulated medical record, taking the record (represented by a notepad) out of his hands, and placing it in a member’s hands. This happened during a “process walk” that we set up to show the workflow of secure e-mail in a medical practice, at Kaiser Permanente’s West End Medical Center, in the heart of Washington, DC.

The visit came about because I was asked to provide information to the Office of the National Coordinator (ONC) about Group Health Cooperative’s work in adopting secure e-mail as part of care across the State of Washington. Since I am a believer of Genchi Genbutsu through the work I have been doing in LEAN, I invited the group to “come and see for yourself,” and they did.

With assistance from the staff at Kaiser Permanente’s West End Medical Center, including Medical Center Chief Doug VanZoeren, MD, I presented the Group Health Health Profile, an electronic health risk appraisal linked to an electronic health record, along with data about adoption of our patient portal, MyGroupHealth. Mark Snyder followed with information about Kaiser Permanente’s HealthConnect project and associated personal health record, kp.org. He indicated that 100,000 of Kaiser Permanente Mid-Atlantic’s members have signed on to the system, giving it a steeper adoption curve than even Group Health as Mark pointed out, since it is has been on the scene for less time. It is now fully operational, though, and forging ahead with features like direct booking of primary care appointments.

(more…)

Thursday’s edition of the National Public Radio (NPR) show Talk of the Nation (TOTN) had a segment on “Do-It Yourself Diagnosis on the Web” featuring PCHIT’s own Ted Eytan and online health guru, Susannah Fox (Associate Director of the Pew Internet Project). The first guest was an orthopedic surgeon, Scott Haig, who had written a piece for Time.com, “When the Patient Is a Googler.” (TOTN has both the audio and an interesting blog discussion that has emerged in reaction to the segment.)

Haig had recounted an experience with a patient who had spent considerable time researching on the Web to understand what to do about her knee pain and what medical professionals might help her address it most effectively. Without going into detail about Haig’s perspective on patients like this (whom he described as “brainsuckers”), it is fair to say that Haig did not appreciate this patient’s approach to information collection, sorting or sharing.

Fox shared some of the mountains of valuable data Pew has collected that tells us not only how many people are using the Web and who they are (demographically speaking), but why and how consumers use the Internet to make decisions. To me, providing empirical answers to these latter questions is where Pew’s contributions are most valuable (there are many estimates of usage that vary but basically tell us: most Americans use the Internet; health is among the most important reasons for using it; there are demographic differences, but growth among disadvantaged populations is growing rapidly; etc.). By answering the “why” and “how” questions, Pew really tells us a lot about the implications of the Internet and HIT tools for changing how care is delivered in the 21st century and why clinicians like Dr. Haig might want to reconsider how they react to the patient he describes (Fox says that Pew focus groups suggest that, otherwise, these patients will either switch doctors or “go underground”–keep acting on Web information but just not tell him).

Ted’s comments complemented the Pew data nicely, because more than how clinicians should “react,” Ted describes what clinicians and delivery systems can do (and what he has done at Group Health in Seattle) proactively. For their patients who want to use information from the Internet (and Pew’s data tell us most of them do), Ted described many strategies that clinicians can use to integrate that well into the care delivery process. Although Ted says the driving force is what is best for the patient, it ultimately has great benefits for the clinician as well.

I wonder if Dr. Haig might eventually agree with that.

As an internal medicine clinician working exclusively in a busy urban adult urgent care setting, I have not been a regular user of MyHealth in our system. Many patients I see have a focused symptoms in a context of multiple comorbidities. My work up often extends to include laboratories and radiology studies that either happen or are resulted 24 to 48 hours after our visit. While I have the capability to communicate with other clinicians through our EPIC system, I continue to use the telephone as my primary mode of communicating with patients. Since many of my patients provide me with a direct cell phone number as we conclude our visit, I have always been able to reach patients in a timely manner.

The opportunity for MyHealth in my clinical setting is the ability to release laboratory results. In many cases, labs and culture results will return 5-6 days after the visit and we want to make sure to close the loop with our patients. At this point, I think we spend an inordinate amount of time playing phone tag to try to communicate the results and the efforts usually concludes with the generation of normal lab letter. Having labs released through MyHealth will be a tremendous improvement. Of course, since our overall patient enrollment in MyHealth is still low, the operational impact will not be huge until we get more people using it.

Two cents from Boston.

Please welcome our second physician co-Author on this blog, Joe Kimura, MD, from Harvard Vanguard Medical Associates (HVMA), and Atrius Health, based in Boston, MA. Joe is an internal medicine physician and wears an administrative hat as the Medical Director for Quality Measurement.

We visited Harvard Vanguard Medical Associates last month, and consistent with our goal, wanted to invite a physician leader to continue the conversation here with us. Joe has graciously agreed. Like many of us physicians, Joe is new to the blogging arena, but interested in sharing the breakthroughs and challenges of innovating in patient-centered care.

In talking about building skill in this medium with Joe, I mentioned that he’s a great communicator, and further that he probably didn’t take a patient history perfectly the first time. His response was that he still doesn’t do this perfectly - he said, “I always end up with follow up questions,” which he asks the patient after reviewing their symptoms and the latest medical information about a particular condition. I do the same, which makes me think I need to question what my definition of “perfect” is in this case. Is it more perfect to have all of the answers up front, or to listen carefully and learn more each time? I think that’s a great analogy for health care improvement and using new communication tools to involve our communities in our drive to make our systems better every day.

Please welcome Joe as he continues to practice the art of communication along with Mark, myself, and Josh.

At the conclusion of my visit to California, I was invited to participate in the Northern California Chapter of the Healthcare Information Management Systems Society December event, which focused on Personal Health Records. Talk about great timing. The presentations will be posted to the Northern California HIMSS web site, so rather than post mine here, I’ll encourage readers to find it there when it’s posted in the near future.

The event was held at the historic Sun Microsystems Auditorium, on the Sun Microsystems campus in Santa Clara, California, the heart of Silicon Valley. I haven’t spent much time in Silicon Valley, so for me it’s sort of a mythical place. It was a great experience.

This was a different audience for me, someone who is more accustomed to a health care provider audience, as opposed to an audience made up of technology professionals. What did I learn? I learned that there is a lot more expertise out there working to make PHRs a reality. I spoke with Martin Fisher, Chief Information Officer, from the MedicAlert Foundation about the different approaches that the health care industry and technology industry are taking to make PHRs a reality for consumers, which includes the idea that the technology sector has very good experience being customer centric across industries. The MedicAlert PHR itself is interesting - it’s a PHR that is needed on demand, must be as accurate as the most recent touch with a person’s health or health care, and has less of a dependency on historical information based on the reason for its use.

I also learned about the work that large health plans like Anthem are doing to combine the data they have in claims databases with clinical data, most notably in Ohio at the Kettering Health Network. For my part, I talked about the work Group Health Cooperative and Kaiser Permanente has done to wire the “last mile” between patients and care teams by integrating the PHR with the electronic health record. It was great to see the audience engaged and interested in furthering PHR development health care. It’s getting some real attention, and we will do well to listen and collaborate with technology experts, by demonstrating the impact on patients for everything that we/they do.

The session was coordinated by Jan Oldenburg, who is on the leadership team for Kaiser Permanente’s kp.org. Jan is actively participating in supporting public forums like this, as well as investing time in defining the best PHRs through participation in policy and standards bodies. I’m mentioning this because I think it’s a promising development that organizations who implement this work on behalf of their patients are going beyond their membership to share what they know with the community, and from my perspective, I think they have to - the only way to experience the power of a personal health record is to use one yourself.

Finally, I believe several HIMSS chapters are hosting forums on patient centered health information technology across the nation, including Washington, DC’s chapter, on January 17, 2008. These sessions are open to the public and a good way to meet other professionals working in the field.

PCHIT links for December 6th through December 12th:

• MiVIA - About Us - A PHR for migrant and seasonal farm workers. Impressive. Who says everyone can’t have a PHR?
• Planetree: Providing Patient Centered Care in Healing Environments - As the description says.
• myPHR.com - My Personal Health Record - Helpful resource site put together by AHIMA

The Center for Children and Families at the Georgetown Health Policy Institute has just released a series of issue briefs on “Strengthening Medicaid.” I authored one of these papers, “Health Information Technology: Innovative Applications for Medicaid,” which discusses strategies that states can use to improve the quality and efficiency of Medicaid programs. The paper addresses how HIT relates to health disparities, health literacy, and the digital divide.

To see more about these issues, see the robust Ix discussion on the patient-centered health information technology (PCHIT) blog.

The Center for Children and Families at the Georgetown Health Policy Institute has just released a series of issue briefs on “Strengthening Medicaid.” I authored one of these papers, “Health Information Technology: Innovative Applications for Medicaid,” which discusses strategies that states can use to improve the quality and efficiency of Medicaid programs. The paper addresses how HIT relates to health disparities, health literacy, and the digital divide.