Academic Medicine 70 Percent There On Lifespan Planning

Posted on | April 18, 2008 | Comments Off on Academic Medicine 70 Percent There On Lifespan Planning

Boston’s Ken Mandl and Issac Kohane in an NEJM “must-read”

Doctors Ken Mandl and Issac Kohane of the Children’s Hospital Informatics Program at the Harvard–Massachusetts Institute of Technology Division of Health Sciences and Technology, Children’s Hospital Boston; and the Center for Biomedical Informatics, Harvard Medical School — both in Boston, have written a "must-read" article in this week’s New England Journal of Medicine. But for all its forward thinking, its vision is underpowered by 30%.

While these two premier leaders from academic medicine informatics acknowledge that the center will soon give way (medical data-wise) to personally controlled health records, and that this moment will shift the locus and control or ownership of the data to the consumer, and that this, in turn, could fundamentally revolutionize the traditions and ownership of "translational research," they fail to envision or at least acknowledge the greatest lever at work here. And that is the structuring of consumer controlled personalized and integrated health data (with other data like financial, educational, social) on new forward facing personal and family health killer planning applications (which I have termed Lifespan Planning Records – LPR’s which will peer out 100 years and become both the organizers and implementers of a new consumer-driven preventive health care system.

Still, it’s a marvel how fast and how far we have come from electronic medical records (EMRs) a short decade ago. The authors envision both information integration and direct consumer involvement in research, raising privacy and funding issues.

The authors state in part:

"This scenario anticipates a new scale of data liquidity, a gush of information from clinical settings — electronic health records, laboratory information systems, and medication-management systems — into PCHR platforms where health care consumers independently decide about subsequent disclosure."

They see change ahead, big change!

"We contend that PCHRs are a disruptive innovation that inverts the current approach to medical records in that they are created by and reside with patients who grant permission for their use to institutions, clinicians, researchers, public health agencies, and other users of medical information. PCHRs use the subscription model, which facilitates consumer-driven data aggregation. In some ways, this model, like a health care version of the financial Quicken product, advances the flow of information far more than models requiring inter-institutional data-sharing agreements."

They acknowledge new partners in health delivery!

"In a recent shift in the health information landscape, large corporations are seeking an integral and transformative role in the management of health care information. The mechanism by which this transformation is likely to take place is through the creation of computer platforms that will enable patients to manage health data in personally controlled health records (PCHRs). Two types of large corporations are involved. Technology companies such as Google and Microsoft see business opportunities, whereas Fortune 100 companies in their role as employers see efficiencies and cost savings when patients can securely store, access, augment, and share their own copy of electronic health information."

And they acknowledge designers now building to advantage these new killer applications!

"On patient approval, companies, governmental and nongovernmental organizations, and health centers can create applications that connect through a programming interface to the major PCHR platforms. These applications should make a PCHR a benefit rather than a chore by enabling services such as the interpretation of laboratory tests, referrals, the provision of customized medical advice, and disease management."

Most importantly, they lay out next steps in the form of five hurdles, including:

1. "… the ready exchange of richer clinical data requires broad agreement on standard data formats."

2. "… entities controlling clinical data systems (e.g., hospitals and practices) have yet to commit to make data available electronically to patients, and to do so, they need cooperation from their information-system vendors."

3. "…under the Clinical Laboratory Improvement Amendments (CLIA), laboratories must release test results only to authorized persons, which, depending on individual state laws and regulations, may not always include the patient. Hence, in many circumstances, the current form of CLIA can be interpreted as preventing the communication of laboratory results directly to patients."

4. "…vast amounts of medical information are still stored on paper."

5. "…since in the United States there is no universal patient identifier or set of business processes to enable ready authentication of the consumer across the health care system, new approaches to establishing identity and trust are needed."

As for the future?

"Despite these challenges, many consumers with PCHRs will soon control a valuable resource — an integrated copy (possibly the only such copy) of their health care information across sites of care and over time as well as the annotations and supplementary information they provide. Under favorable conditions, consumers will benefit considerably as new business models develop, enticing them to engage in research, establishing communication channels between researchers and PCHR owners, and competing for consumer attention over those channels."

Left unsaid? Such empowered individuals will advantage data in a direct and primary fashion. That is, they will take their own and their family (past and present) data, and attempt to plan and point and respond to it in a manner that allows their future generations to reach their full human potential. And companies such as Google, Microsoft, Intel, GE, Phillips, Sony, Citicorp, and competitors will rapidly bring products to market (purchased with consumer dollars and/or public dollars for at-risk populations) to help them get there.