I’m working on a new project within Health Level Seven (HL7). HL7 is a healthcare standards development organization (SDO). It’s one of the places I go to help develop the information exchange standards we need to make it possible to share information between the clinical electronic medical record (EMR) systems used by doctors and the personal health record (PHR) systems used by people. It’s also where I go to help develop the security, privacy, and consent standards we need to make it possible to not share information when it isn’t needed or when we choose not to for personal reasons.
The project aims to create patient stories that can be used to create what are called “Use Cases”. A Use Case is used to demonstrate the functional needs that a new technology should address. Right now, there are very few Use Cases written from the point of view of the patient. Due to the order that has been taken to address the needs of clinicians and payers first, people’s needs have not been the priority. But that’s beginning to change.
A new document published by the Office of the National Coordinator for Health Information Technology called, “Connecting Health and Care for the Nation, A Shared Nationwide Interoperability Roadmap”, shows signs of the trend toward recognizing the needs of patients. The vision establishes the concept of “patient-centered health care” as something that embraces the value of the individual inside and outside the health care system for improving both heath and care. The vision is for individuals to become effective managers of their health and wellness where they live, work and play, by using information technology. Our Nation is putting the people’s needs front and center in this new shared vision. Now, we just need the information technology standards to follow this path.
It isn’t feasible for people—people who are not part of the standards development world—to come to HL7 meetings and create technology standards. It is however possible for people’s needs to be captured and shared in real-life stories that can form the basis for the Use Cases that guide the development of standards. The project I’ve started within HL7 to collect people’s health stories will provide a means for the needs of individuals to make their way into our developing health information technology (IT) ecosystem.
You can read the roadmap for yourself at: https://www.healthit.gov/sites/default/files/nationwide-interoperability-roadmap-draft-version-1.0.pdf