For me, the work of maintaining best health with a chronic disease takes large parts of each day. I feel fortunate when the routine just flows without thinking. Like walking used to feel. I didn’t have to focus on each step I took. Now I scan for uneven pavement, pick up my left foot high enough not to trip, and check my fuel gauges: Have I reached my daily step limit? Has my medicine kicked in yet that helps my impaired nerves work so I can safely walk? Should I walk where ever I’m going or use the electric wheelchair or Lyft? I miss thoughtless walking. The process I use for managing and adjusting my self-care routine includes experimentation, tracking, journaling (journaling is narrative tracking), adjusting. I try to create a care plan for myself complete with goal and actions – project management. I use lists, spreadsheets, and iPhone/Apple Watch reminders to manage the plan and see how it’s working. Read More
Everyone makes decisions about managing pain sometime in their lives. Most people with chronic illness make repeated decisions about managing pain every day. Some people are fortunate to have strong relationships with trusted clinicians or care partners to share the decisions about managing pain. An alarming number of people have found themselves in a downward spiral of addiction to opioids first taken to manage their acute or chronic pain.
Greetings fellow patient/caregiver activists and advocates! I need your help to be successful in some work I’m doing to help people use information better in managing pain. This post takes two minutes to read. A couple of links might take 7 minutes to read. Thinking and responding…. If you can, please take the time. I’m part of this team and I have my own experience with pain management and decision-making. We need a wider reality check. That’s you. Thanks for all you do. Read More
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