Tag

GMMDD. data

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

You say you want a revolution

By | Advocate, Leader | No Comments

Yesterday, I was listening to Casey Quinlan’s podcast, Healthcare is Hilarious: an interview with Victor Montori who wrote Why We Revolt-The Patient Revolution for Careful and Kind Care.  I haven’t read his book yet, but I will. The interview on Healthcare is Hilarious is stellar.

Merriam-Webster says a revolution is:

  • a sudden, radical, or complete change
  • activity or movement designed to effect fundamental changes in the socioeconomic situation
  • a fundamental change in the way of thinking about or visualizing something: a change of paradigm * the Copernican revolution
  • a changeover in use or preference especially in technology *the computer revolution *the foreign car revolution

One of the things that Victor said was that reformers are important, but healthcare is not designed for health and wellness, care and kindness. The entrenched forces will not fundamentally change with reform. It needs a revolution, a patient revolution. I’ve never been good at putting other people’s labels on myself – I don’t know if I’m a reformer or a revolutionary. During my professional and now activist career, I’ve seen myself as a catalyst for change – sustainable change that continues when you’re gone.

My revolutionary heroes include: Mary Wollstonecraft (sparked the change to allow women to have the right to full participation in society), Mahatma Gandhi (the power of nonviolence and forgiveness), Oliver Cromwell (translating the Bible into English so lay people could read it), Florence Nightingale (invented nursing and used statistical analysis to improve care), Albert Einstein (the theory of relativity changed how we think of time and space), and Rachel Carson (sparked the global environmental movement).

The relatively recent revolutions in healthcare that stand out to me include the discovery of anesthesia, legislation for Medicare, Medicaid, the Consumer Protection Bureau, Patient-Centered Research, and universal voting rights for citizens over the age of 18. Add value-based payment, elevators,  asynchronous communication,  palliative care, anti-viral medications, precision medicine, synthetic opioids, desalinization of water, mass-produced solar power, worldwide transportation (of people, food, products, and pests), smoking restrictions.

With some revolutions, there’s no going back. Anesthesia isn’t going away.  Neither are elevators. Every revolution has unintended consequences affecting some people badly, even lethally. Anesthesia can cause harm. So can elevators, asynchronous communication, and synthetic opioids. Legislation can be undermined or rescinded. Almost anything can be co-opted and diluted. Most revolutions are never-ending projects requiring constant vigilance and advocacy.

In my narrow world frame, I look for the magic levers of best health.  What small things make an outsized difference?  Obviously, drink clean water, eat just enough, don’t smoke, get plenty of rest, do meaningful work are magic levers. Maybe the revolutions are magic levers, too.

The revolutions that I’ve hitched to are:

  • People at the center of care sitting at the tables of governance, design, operations, and learning for research, policy, payment, technology, and care delivery.
  • Individual ownership (access to, contribution to, authorization for, and payment for) their own health data.
  • People and relationships at the center of care making decisions together for best health.
  • Healthcare as a right with universal access.

Note: people at the center of care are patients, direct care clinicians, and the people that support them.

I like to try to predict future revolutions, although my track record of predictions is terrible (I was never going to get married or have kids. I was going to keep my last real job until I was 70 and then I’d retire). The thing about revolutions is that they’re crazy difficult to predict and harder to consciously engineer. I’m old now. I don’t want to run anything anymore. I’m happy to follow revolutionary leaders who are charismatic, kind, caring, and persistent.  I can be a thought leader, a writer, and a solid team member. So, I am not the revolutionary.

Viva la revolution!

Photo by Sadık Kuzu on Unsplash