The real publications are the friends we made along the way*
OpenNotes circa June 2017: My first day in the office.
After nine years of working at the intersection of patient advocacy and health services research, this is my last week with OpenNotes at Beth Israel Deaconess Medical Center.
Working with the team at OpenNotes never felt like a job. From my earliest days with Tom Delbanco, Jan Walker, Cait DesRoches, and Sigall Bell, every moment was a learning experience. Each week, I found myself saying to Cait, my boss, "I can’t believe you pay me to be here.”
Over these nine years, my role transformed. From digital communications (remember Twitter?) to grand rounds to travels around the country and around the world. I helped co-author 61 academic publications and delivered 166 talks in 5 different countries (plus countless virtual presentations). As a punk rock kid with an associate’s degree in graphic design, I never dreamed OpenNotes would push my CV, and me, toward excellence.
Every colleague (past and present) was dedicated to the mission of health information transparency. Our funders made it possible to hire me, a patient advocate, to work alongside fellows with post-graduate degrees (Charlotte Blease, Maria Hägglund, and Chethan Sarabu). Through it all, I had the pleasure of growing alongside Amanda Norris, as we both transitioned from roles in OpenNotes communications to investigators in our own right.
During these same nine years, OpenNotes allowed me the flexibility to collaborate on projects outside of our core focus… topics close to my heart (often associated with my brain). I formed close collaborations with “friendtors” at the University of Colorado (Bethany Kwan and CT Lin), and with clinicians working in serious illness and palliative care (Jared Rubenstein and Matthew Tyler). I dove into brain tumor genomics and the return of research-grade test results with Yale and the Brigham (Elizabeth Claus, Roel Verhaak, and Kevin Johnson), and into the regular return of test results with Vanderbilt, UC Davis Health, and UT Southwestern (Bryan Steitz, Trent Rosenbloom, Scott MacDonald, Rob Turer, plus CT Lin again!).
More importantly, OpenNotes gave me the flexibility to work on projects with other patient advocates who were breaking down barriers in research. Some were already established “patient researchers” in their own right (such as Dana Lewis, Hugo Campos, Sara Riggare, and Emily McIntosh†). Others I had the joy of watching as they discovered, formed, or joined research initiatives of their own (Adam Hayden†, Andrea Downing, Daniel Myers, Rudy Fischmann, and Nestelynn Gay).
When Cait offered me a job, I had no idea it would be the longest I’d ever had, or that it would lead to a vision of what I would do next.
More to share in another week about what’s next for me… But if my future looks (and feels) anything like my past, I’m going to be alright.
†This individual is now deceased.
* “The real publications are the friends we made along the way” is a quote stolen from my friend Jared Rubenstein, MD, a “friendtor,“ and overall really great pal.
