Sharing Data per Patient Preference

One aspect of the Interim Final Rule and Meaningful Use is the notion of sharing office summaries and transitions of care with patients electronically. The vendor community does not currently have a unified strategy to do this.

Although the Interim Final Rule describes the content and vocabularies for the clinical summary record, it does not provide implementation guidance for transmitting that record to the patient's preferred repository - a PHR, secure email, fax, or mobile storage device. Additionally, ambulatory offices and hospitals do not have a workflow defined that enables them to accomplish this task.

There is the FHA Connect NHIN project which clearly defines a mechanism for sending records to and among Federal agencies, but there is no project to connect existing personal health records, patient portals, secure email, and fax via a single easy to use approach.

There are several possible architectures to enable patient data to be routed

a. A mechanism to leverage existing email systems with added security (SMTP over TLS). For a broad discussion of these issues, see Wes Rishel's blog

b. A gateway (vendor provided or open source) that sits on the edge of a provider network and is capable of interacting with PHRs, email systems, fax systems, or patient controlled data repositories.

c. An industry standard API that would serve as the virtual front door to every PHR, so that EHR vendors could easily route patient records to the PHR of a patient's preference. For example, every patient could get a standard URL i.e.

http://www.google.com/health/jhalamka

http://www.healthvault.com/jhalamka

http://www.patientsite.org/jhalamka

and with this URL, the EHR or Hospital Information System could use a RESTful protocol to send a summary of care to the patient's desired repository.

Providing a mechanism for secure, simple transmission to the site of patient's choice will put the consumer at the center of the care process - ensuring the patient gets electronic copies of their records at each transition of care and access to educational materials so that patients understand their diagnoses and their medications. The result will be more shared decisionmaking, enhancing the patient/provider partnership. Once the data is stored in the site of the patient's preference, the patient could choose to share their data for clinical research, public health surveillance, or coordination of care with other clinicians via a local health information exchange or the FHA Connect NHIN approach.

My comments on the IFR and NPRM will include the need for this work.