Mary Jo Deering is the director for Informatics Dissemination, National Cancer Institute’s Center for Bioinformatics; she has (self-professed) been around health informatics in DC for quite a while!
The big problem they face is that there is a divide between health care practice and clinical trials. Only 3–4% of cancer patients are in clinical trials, and all trials are delayed because of enrollment. But there is no general EHR which people can be matched with. Right now neither the eligibility critieria nor the patient information are standardized. Can this be done thru a PHR instead? Maybe. They are putting together cancer centers to try to match all types of data form the big NCIs to make the loop of all information, on a standards based information infrastructure. (The caBIG initiative)
She tracks this all back to NCVHS talking about PHRs in 1996, with their report in 2001 being a catalyst for the NHIN movement. It distinguishes person,
provider and populations so she has provider and personal centric views.
Then there are syntactic interoperability (can the machines talk) and semantic interoperability (does the language mean the same). NCVHS has recommendations for standards on semantics in a Sept 2005 report. AHIC is trying to get people to concentrate on a “clipboard”. But the capacity for interoperability is not the same as actually having information exchanged. Reluctance to share data is a continuing problem, not least for incentive and business reasons. But nonetheless data standards and getting them worked out is the
Mary Jo says instead of building from where we are, why not build the working model of the vision? And then see if that motivates people.
She’s fabulous BTW, and I hope to engage her some more.