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EHR

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Patient Ownership of Data?

By | Advocate, ePatient, Informaticist | 6 Comments

Do you care about health data ownership and want to stay abreast of national initiatives to wrestle with and solve ownership issues? If so, this post is for you.

What does it mean to own my health data? Is it like owning my car or my house? Is it like a copyright? Do I own it by myself or do I share ownership with the people or systems that enter the data (my doctor, the lab, my care partner) or store the data (the electronic health record, the app, the device)? Is it ownership or is it a right, like a civil right? I confess that I know this is important, even critical, but the more I explore, the less I feel like I understand.

Much to my surprise, I was invited to attend a National Academy of Medicine (NAM) Digital Learning Collaborative meeting about Patient Ownership of Data. Participants included stakeholders from EHR vendors, government agencies, hospital and medical practices, insurance companies, patients (I was one of several), and others. See a summary here. The meeting sought to explore several questions (paraphrased by me): Read More

Give Me My DaM Data::Open Source

By | Advocate, Clinician, ePatient, Informaticist | One Comment

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

  1. Data that matters to me
  2. Data that I can understand
  3. Data that’s correct
  4. Data that I control
  5. 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

Eureka! Triggers and Signals

By | Advocate, Caregiver, Clinician, ePatient | 5 Comments

When Liz found herself unwilling to floss, she knew that major depression was soon to follow. She’s going to need help.  She tells someone who knows how to help her before she loses the will to take any action. When I start to get dizzy, I know my MS symptoms will soon get worse.  Drinking water almost always helps. Water! Sometimes I feel like I’m going to cry. No real reason. Normal life. It’s a signal that I’m overtired. Nap or meditation is next.  It always works. If John feels stressed and bloated, a flare-up of his Crohn’s is soon to follow. He avoids certain food, takes acetaminophen, and stays near a bathroom. When Tiffany gets a rash she needs to see her doctor within a couple of days. If she has joint pain as well, it can’t wait a couple of days.  Tiffany has lupus.

Liz, John, Tiffany, and I recognize signals that trouble is coming and action is needed. We learned the signals because we are wired to take the step back and watch ourselves from a distance. We are mindful and curious about patterns. It takes time until the Eureka/recognition minute hits. None of our doctors ever asked us if we knew our signals or asked us about our patterns.  We are all four fortunate to have a friend or care partner who listens to our ramblings.  It’s during these ramblings, complaining, wondering, pattern-seeking, and problem-solving that we learned first one signal, then more. Two of us have clinicians that helped us figure out what to do once we told them about our signals. The other two tried stuff they learned from our advocacy associations and social media networks. We are so relieved to be building this tool chest of actions to take when we recognize signals. We are eager to discover more patterns and signals. It’s like turning over a rock and finding a twinkling gem.

Once we recognize a pattern, a signal, and an action that works, we can start to look for triggers. Triggers are stressors we know will be likely to cause a signal. Managing triggers is prevention. Liz, John, Tiffany, and I have a common set of triggers: emotional stress, inactivity, smoke inhalation, insufficient rest. We also have unique triggers.  They are many and varied.

Traditional doctor visits seldom contain routine time to learn about and discover signals, triggers, responses, and prevention. The electronic medical records seldom keep track of this learning, action, and response. It makes sense (silly, but makes sense). It’s time-consuming and it’s not in the many medical professionals’ training and workflow.  It’s up to us and our personal health team. I find that people who blog about their illness and their life challenges caused or made worse by their illness, almost always write about signals, triggers, and actions. You can find many on The Chronic Illness Bloggers here on Facebook. Liz, John, Tiffany, and I also keep track as we learn about what worked – Spreadsheets, journals, or blogging.

Not everyone has a pattern-seeking brain. Even if they do have a pattern-seeking brain, they may feel so bad that there’s little space to use it.  So it’s up to our care partner, our friends, our social network, to help us.  It’s liberating. It’s diagnosis agnostic (true for any chronic illness). It’s so totally worth the effort. What have you learned?

Dandelion Trigger Photo by Dawid Zawiła on Unsplash

Pattern Photo by Amador Loureiro on Unsplash

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