Lessons Learned from a Fierce Patient Advocate, Erin Gilmer

Long time readers of Healthcare IT Today and members of the Health IT and patient advocate community on Twitter probably are familiar with Erin Gilmer.  She’s one of the most fierce patient advocates I’ve ever known.  Buoyed by her keen intellect and helped by her law degree, she brought light to so many issues that plague us in healthcare.  I’m sad to report that Erin Gilmer passed away this week.

As many of us mourn the loss of Erin, she’s received many tributes from those who knew her on Twitter.  If you want a feel for the perspectives she shared, there’s no better place to start than her Stanford Medicine X talk which came after this letter she wrote to organizers:

Plus, be sure to check out her blog, Health As a Human Right which James Elliot aptly described as a “treasure trove of information and thoughts and strategy.”  James also shared a thread on her contribution to the #insulin4all movement and the modern disability movement.

Here at Healthcare IT Today she advocated for apps with personal health data being subject to HIPAA, educated us on Health Literacy opportunities, and shared why we shouldn’t take calculated risks with security.  I love how she expanded my thinking on the idea that “We’re All Patients” is just not true.  She also introduced me to the idea of Patient Burnout in an #HITsm chat which really expanded my thinking and understanding of the challenges chronic patients face.

Here’s a few other lessons Erin taught me so vividly:

Unfettered Healthcare Interoperability Can Backfire – While it’s easy for those of us in health IT to see the benefits of sharing health data.  Erin often reminded us that sometimes sharing data can actually cause more issues for the patient.  She reminded us that the patient should be the one in control of the sharing and informed of the sharing to avoid hurting the patient.

Trauma Informed Care and Her My Care Concerns Document – Check out her blog for tons of trauma informed care information, but I was extremely touched be her My Care Concerns document.  It’s an eye opening look at something that many of us can’t understand based on our own experiences.  It also illustrates some of the challenges we face providing great care to patients which have such a broad range of needs and past history.

The Value of a Personal Health Record and How Many Ignore It – Erin had an extremely complex health history and so the idea of filling out that history every time she saw a new doctor in the 15 min before an appointment was laughable.  However, clinics continued to ask her for it.  She created the most comprehensive Personal Health Record (PHR) template I’d seen.  It was sad when she’d go to all that work and then clinicians would just dismiss it.  Our 15 minute visit model wasn’t intended for the challenges Erin faced.  She’d describe caregivers who were wonderful and compassionate and others who weren’t.  It all felt like a struggle and explained why she was so passionate in her advocacy for change.

Calling the Cops When Someone is In Distress Can Make Things Worse – This is a challenging topic, but many times Erin was faced with people who thought they were helping that caused more trouble.  S.E. Smith describes this principle better than I could.

I’m sure there are many more.  This last one is what made interacting with Erin a challenge for me.  I never knew if what I said to her was helpful or if it would hurt her more.  I wanted to help and didn’t want to hurt.  Erin had a complex past, a complex medical condition, a complex relationship with healthcare, and a complex life.  While we all have our faults, I take some solace in our last DM conversation where we talked about how judgy we as humans can be.  And I loved her message to me which said that she believed we’re on a long arc as people to learn to be more forgiving.  I think and hope she’s right.

In her final messages she expressed how hard she tried, how much she loved her community, and that she was sorry she’d failed.  In my view those feelings seem to come as much from her ambition and the size of the problem and less about her efforts.  I know her passionate defense of patients, her advocacy for those in need, and her willingness to share the hard stuff impacted me for good in so many ways.  I often would find myself writing an article and think “What would Erin say about this?”  No doubt her story and advocacy has impacted many people in profound ways.

On a more personal level, my last interaction with her was a few days before her passing.  She reached out via DM to comfort me after learning of my own personal challenges.  It’s hard for me to comprehend her trying to console and comfort me while she experienced such pain in her own life.  A guy she’d only ever interacted with online and never met.  Although, maybe that’s a fitting tribute to Erin.  She did what she could with whatever energy she had left.  And that was a lot.  That’s something I’ll never forget.

P.S. She also may have at least one cat that needs to be rehoused in Colorado.  She LOVED her cats!

About the author

John Lynn

John Lynn is the Founder of HealthcareScene.com, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference, EXPO.health, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.

1 Comment

  • I noticed in the New York Times article that one of her diagnoses was Borderline Personality Disorder. I guarantee that she got that tag – a) because of behavior provoked by medical trauma that patients with complex medical conditions receive, and/or- b) having the nerve to talk back.

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