I’m sensing a harmonic convergence for data control by patients and their trusted licensed clinicians through Open Source. Could a Give Me My DaM Data revolution be upon us?
Give Me My DaM Data (Data About Me) has been a rallying cry of the ePatient Movement (ePatient = Empowered, Engaged, Equipped, Enabled) for quite a while. At the same time, physicians and other licensed clinicians express increased frustration – no, outrage – that the electronic health records support billing, not clinical care. See the National Academy of Medicine’s Care-Centered Clinical Documentation in the Digital Environment: Solutions to Alleviate Burnout.
For me, Give Me my DaM Data means
- Data that matters to me
- Data that I can understand
- Data that’s correct
- Data that I control
- Data I can use to make decisions with my licensed clinicians
In short: Everyone with permission from me sees the same correct, up-to-date data set.
Today, let’s consider #4 Data that I control
- I can access it easily
- I can track who or what is trying to see it, actually sees it, adds to it, changes it (history of use)
- I can give and withdraw permission to whom I want
- If there’s money to be made from it, I get some of it
Right now, data about me is controlled by EHR and health app vendors, hospitals, insurance companies, government, and companies with a business model that sells data about me – not me. Read More