However, out of all the aspects of this job, the moments when I’ve been able to work on patient advocacy projects and learn more about how a dry eye diagnosis can be understood in the context of everyday life have definitely been the most fascinating for me. Human health is something that I’m increasingly understanding to be a complex whole instead of an arrangement of discrete parts, and a piece of that whole is a system of people you may never meet who are researching diseases, testing treatments, and advocating for patients.
Rebecca just got back from the 2017 Annual Meeting of the AAO. (Click the logo for details of the conference on AAO's website.)
Earlier this month, Rebecca made a trip from Poulsbo to New Orleans for the American Academy of Ophthalmology annual meeting. We’ve talked a couple times since then about what she learned from various presentations and meetings, and I’d highly encourage you to go and read her notes here, or what she wrote about it in the most recent issue of KeratoScoop, her newsletter. On Saturday, she visited the exhibit hall, with showings from Lipiflow, Allergan, Alcon, Ocusoft and more, met with a representative from Shire, and attended talks featured as part of the Cornea Subspecialty Day.
One of my big takeaways was the intensity of purpose that seems evident in the way that Rebecca described several of the presentations and meetings. The focus on the patient’s perspective is something that I’ve always been surrounded by while working here, and it’s hugely encouraging to hear about so many others who hold this to be the guiding principle by which they work. To me, people who are so driven by the possibility of creating systems, technologies, and services that have a positive impact on other lives are people to marvel at, and they’re really not so rare. Rebecca attended a working group meeting composed of about twenty professionals, convened for the purpose of, in her words, “exploring the formation and introduction of a set of standardized dry eye disease outcome measures, referred to as a ‘core outcome set.’” In order for more effective clinical treatments to become available, research must be conducted; in order for a body of research to be useful, it needs to be conducted using consistent measures; in order for research to be conducted with consistent measures, a bunch of people need to have a bunch of discussions…
I think it is absolutely critical to continue to educate each other about our experiences navigating health. There are so many different knowledge bases at play here; the AAO conference had around 30,000 ophthalmologists in attendance, a number that doesn’t even begin to approach the community of patients with myriad ocular conditions, each of whom brings a unique set of experiences to the table. The scale of any project that seeks to tap into these resources is daunting, but promises outcomes which I cannot help but get excited about.
Going forward, I can’t wait to continue to work on ways to coordinate with some of the people Rebecca spoke with at the conference on making use of research, developing new tools to help patients manage their symptoms, and learn more about the complex world all of these pieces fit into. More to come…
Any thoughts on my thoughts? Adventures with the world of research you’d like to share? Post about these things and more in the comments!