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Nothing about me, Without me.

More about the work of the group OpenID HEART (Health Relationship Trust) that I blogged about a couple of weeks ago. Health Relationship Trust: interesting name – people at the center trusting the relationships in their health journey. My blog tag line is: Discovering the magic levers that impact best healthMy personal mission is: Increase the sense of balance people, caregivers, and clinicians feel as they work together towards best health.   Best health is tough enough. Relationships and trust are magic levers of best health and live at the core of people’s balance.
The electronic interconnectedness of people, their caregivers and professionals in their agencies allows our personal reach, our health neighborhoods to expand. The flow of information increases hugely. It’s wonderful: We can keep track of loved ones from a distance. We can find neighborhoods of people like us all over the world. We can communicate with our health team where ever they live.
But this information exchange comes at a price. The big business of information is the price. We have gotten away from nothing about me without me. We have most control of direct person-to-person communication (talk, snail mail, email).  Trust still matters. Will the person listening keep it to themselves?  Do I care? As more data about me is collected, who owns that data?  My control decreases dramatically. Can I share where I want? Can I correct errors? Can I retrieve data?  As automated systems for data exchange are created, can I influence the content that is exchanged?  Not just whether or when, but also what content matters to me?

Lord, it gets so complicated. Companies make oodles of dollars in health data systems. The natural corporate inclination is to control that data exchange by requiring people all over the place to use only their products to exchange information. If you’re like me and use caregivers and providers that have different data systems, you’re s**t out of luck.
So what is OpenID HEART trying to do? They are trying to develop ways to allow people to control what health information is exchanged with whom in a way that makes their control easy and agnostic (not vendor dependent). Designing the setup to be easy (Giving instructions (knowing and sharing what you want while being able to change your instructions) and designing the process to run in the background where you don’t have to pay attention unless you want to. Instructions and a handshake. This what Danny prefers and a commitment to follow his preferences. 
I can’t oversell the importance of this. Today, I know enough about the technology to be dangerous, but I’m committed learning and sharing. Onward.