For individuals to drive their own health journey we must have the key to the ignition, be in control of the accelerator, the brakes, the steering wheel, and be able to see the full dashboard of cues about ourselves. At the same time we need to control access of passengers, be able to give the keys to whoever we choose, deny access to whomever we choose, and trust those who take the wheel for us.
We also need to be able to read, share, and correct the story about our journey. We need to contribute our chapters – our destinations (goals), our lists, our tracking, our feelings. If we want to, we need to be able to ask others to contribute chapters. We need an eBook version of our story that we can edit and share portions we choose with anyone we give permission to read it. With many people and reports about us, contributing to our book, chances are some of it will be wrong. Wrong person, wrong time, wrong diagnosis, wrong, wrong. We are the only common denominator of our story. We need a way to correct the errors we find. Our lives could depend on it. We are the single source of truth about our story.
I love puzzles: This is the puzzle of many lifetimes! I’m driven to contribute to solving some of this puzzle. Last week based on a recommendation of a fellow member of the Society for Participatory Medicine, Adrian Gropper, I joined a group, OpenID-Heart.
The HEART Working Group intends to harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to RESTful health-related data sharing APIs, and to facilitate the development of interoperable implementations of these specifications by others
What does this mean? Many people and interests throughout the world are working on solving the puzzle of privacy, security, and health data sharing. An API makes it possible for computer programs to talk to each other and share data. REST means that the API can expose something the software does while protecting other parts of the application. Health data is big business and very personal. The voice of the people at the center of care is critical. I attended my first weekly hour-long meeting. While much of it was technical and over my head, I joined because someone asked about patient goals. I’ve never heard techie’s speaking about patient goals. To me that’s, What am I, are we, trying to accomplish on my health journey? Certainly end-of-life choices is one, but more often it’s less pain, less fear, more fun, managing my meds, hanging with friends and family, fitting in my clothes, getting to work, getting to the doctor, having love in my life. I think I’ve died and gone to heaven. I’ll keep you posted.