The dust has settled. The last few days of last week were completely dominated in the US medical IT news by these to articles in the NEJM:
Ashish K. Jha et al., “Use of Electronic Health Records in U.S. Hospitals” [4]
and
David Blumenthal, “Stimulating the Adoption of Health Information Technology” [5]

I would like to focus on the article that got relatively little attention:
“Your Doctor’s Office or the Internet? Two Paths to Personal Health Records,” by Paul C. Tang and Thomas H. Lee. [1]

New terminology

First of all, another name, another terminology, “iPHR”, integrated PHR.

In the article the authors offer solutions on how to fill “the [increasing] gap between patients’ desire for information and physicians’ ability to provide”:

“Two related but distinct options are emerging. One is a stand-alone personal health record (PHR), such as the Internet-based tools for patients developed by Google, Microsoft, WebMD, health insurance plans, and others. Our bet, however, is that the other option, the “integrated PHR” that is an extension of physicians’ electronic health records (EHRs), will go further in facilitating the type of physician-patient relationship that will improve health and health care, at a lower cost.”

The concept of integrating PHRs with EHRS was the main issue of a previous paper by Tang et al. [2] on which I commented a week ago. This time however, he and his co-author introduce a proper term and definition for it:

“[...] integrated PHRs are essentially portals into the EHRs of patients’ health care providers.”

My 23 March post dealt with the difference between EMR and EHR, where in my view, an EHR = EMR + patient. Due to people like Tang, the patient has been separated from this basic concept of an EHR and a separate entity PHR has been created.

“Electronic Health Record – An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be created, managed, and consulted by authorized clinicians and staff, across more than one health care organization.”
“Personal Health Record – An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual.”

Those are the definitions according to Dr. John Halamka in his IT Primer. As I said before, the difference is in the word “created”.

My point? I still see no reason why we should not stick to the original 2 definitions, EMR for the pure medical, EHR for the patient participation.

The money trail

In the 2006 article [2], Tang et al asked “Who Should Pay for Personal Health Records?“. Those were the days before Google Health or Microsoft HealthVault.

“Determining who will pay for PHRs is key to establishing a business case for adoption. Because health care payers and purchasers are the primary beneficiaries, they should probably be the primary ones who bear the cost of PHRs. However, the evidence supporting the rationale for payers to provide PHRs is not mature, and they may be reluctant to do so. Perhaps providers will recognize that paying for PHRs may give them a competitive advantage in the marketplace. Small incentives to health care providers may be enough to encourage them to adopt EHRs that link to PHRs. Many of the putative financial benefits of PHRs only occur when PHRs are tightly integrated with EHRs, so that seed funding of PHRs in practices that operate an EHR might advance PHR adoption to the “tipping point.” Patients may be willing to pay a small amount, for example, $60 a year, for the physician-communication component of the PHR. However, this model is unlikely to cover the full costs of PHR licensing or development, physicians demands for remuneration may be higher, and some patients who might benefit most from PHRs might not use the service if they had to pay for it.”
“Government can play a number of important roles in increasing PHR use. At the infrastructure level, the federal government could catalyze development and adoption of data and interchange standards for key PHR content areas. Relevant federal agencies such as the Agency for Healthcare Research and Quality and the National Library of Medicine should sponsor research to assess the clinical and health behavior benefits of PHRs.”
Tang et al, 2006 [2]

“If integrated PHRs are to have an expanded role in patient care and communication, there must be business models supporting their use. So far, the systems’ costs are being underwritten by provider organizations, and the business case for their use in the fee-for-service health care environment is weak. For PHR use to be sustainable, reimbursement policies must provide rewards for “non-visit-based” care that might improve health outcomes and lower costs by averting the need for visits and hospitalizations. So far, the Obama administration’s focus has been on interoperable EHRs, and rightly so. However, we believe that integrated PHRs — and the patient-provider partnerships they enable — will play a major role in influencing health-related behaviors that are crucial to improving U.S. health.”
Tang et al, 2009 [1]

Adoption?

Integrated PHRs are already used by millions of patients, and their adoption is reaching a tipping point in some regions of the country.

Really? PHRs should get filled by information contained in EHRs, but only

“1.5% of U.S. hospitals have a comprehensive electronic-records system (i.e., present in all clinical units), and an additional 7.6% have a basic system (i.e., present in at least one clinical unit)” [4]

and from recent publications we know that the adoption in small practices is even smaller [5][6].

Maybe they refer to the use of stand-alone PHRs?

40,000 patients at Beth Israel Deaconess have PHRs, but only 42 patients have added any information to those files, Halamka says.
Data privacy concerns remain as Google PHR grows
See also: PHR Platforms Race: HealthVault Updated, Consumer Interest Still Unproven

Where is the patient?

Tang has come a long way:

“In addition to the provider-centric recording of the patient’s interaction with the health care system, a PHR would include information, entered by the patient, about daily symptoms, over-the-counter medicines taken, personal exercise programs, special diets, or data from home monitoring devices. By combining personal health information with knowledge about diseases and their treatment, a PHR system can provide tools to help patients become more active participants in their own health care.”
Tang et al, 2005 [3]

“For consumers, PHRs have a wide variety of potential benefits. One of the most important PHR benefits is greater patient access to a wide array of credible health information, data, and knowledge. Patients can leverage that access to improve their health and manage their diseases. Such information can be highly customized to make PHRs more useful. Patients with chronic illnesses will be able to track their diseases in conjunction with their providers, promoting earlier interventions when they encounter a deviation or problem. Collaborative disease tracking has the potential to lower communication barriers between patients and caregivers. Improved communication will make it easier for patients and caregivers to ask questions, to set up appointments, to request refills and referrals, and to report problems. For example, communication barriers are responsible for many adverse drug events in the outpatient setting. In addition, PHRs should make it easier for caregivers (proxies for the patients) to care for patients, which is difficult today. A critical benefit of PHRs is that they provide an ongoing connection between patient and physician, which changes encounters from episodic to continuous, thus substantially shortening the time to address problems that may arise.”
Tang et al, 2006 [1]

With his almost closing remark in the NEJM article:

“Users of integrated PHRs have demonstrated that creating shared records for patients and their health care team can enhance patients’ ability to become active partners in their own health care.”

Tang gives it another try. However, for that quote the authors had to go back to a 2005 survey from PAMFonline on the use of PHRs, of which “92 percent of PAMFOnline users were satisfied with the services offered” but no actual numbers are mentioned.
Their source: “Unpublished data from the 2005 PAMFOnline survey conducted in March 2005“. [2]

Last week I wrote:

In short, “the active participation of the citizen in his or her health and care pathway with the interactive use of Information and Communication Technologies” as I defined patient 2.0 empowerment in a recent publication and that was strongly advocated [...] by Tang et al, is still far away.

But early on in the paper the authors show how far away they have gone from it:

“They [iPHRS] can offer patients as much access to data, scheduling resources, and communication among members of the health care team as providers are willing to permit.” (emphasis mine)
Tang et al, 2009 [1]

Nothing left of active participation by the patient, or as Halamka defined it: “managed, shared, and controlled by the individual“.

Lodewijk Bos

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[1] Paul C. Tang and Thomas H. Lee, “Your Doctor’s Office or the Internet? Two Paths to Personal Health Records,” N Engl J Med 360, no. 13 (March 26, 2009): 1276-1278.
[2] Paul C. Tang et al., “Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption,” J Am Med Inform Assoc 13, no. 2 (March 1, 2006): 121-126.
[3] Paul C. Tang and David Lansky, “The Missing Link: Bridging The Patient-Provider Health Information Gap,” Health Aff 24, no. 5 (September 1, 2005): 1290-1295.
[4] Ashish K. Jha et al., “Use of Electronic Health Records in U.S. Hospitals,” N Engl J Med (March 25, 2009): NEJMsa0900592.
[5] Steven R. Simon et al., “Correlates of Electronic Health Record Adoption in Office Practices: A Statewide Survey,” Journal of the American Medical Informatics Association : JAMIA 14, no. 1 (February 2007): 110-117.
[6] David Blumenthal, “Stimulating the Adoption of Health Information Technology,” N Engl J Med (March 25, 2009): NEJMp0901592.

30 March 2009 | Categories: Blog.
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