To my colleagues, who also happen to be young adults living with chronic illness:
As you know, the weeks leading up to an ImproveCareNow Community Conference are a few parts busy, a few parts exhilarating, and a few parts stressful (though luckily the ratio changes by the day). There is a lot to do, but our team has done it many times before and indeed our team has grown exponentially as we’ve come to consider the whole community part of the planning process. It’s hard work, but its work we’re doing together and we all look forward to celebrating together once the big event arrives.
One of my tasks is to curate session ideas. Then I help presenters develop their outlines, ensuring content is tailored to the audience and reflects good quality improvement (QI) principles, and (maybe most challenging) help keep presentations within the time limits. This is actually a favorite part of my job because it lets me get so close to the content—the real work of learning and sharing—and also because it gives me the chance to engage with many people from across this community. This type of coaching is definitely fun for me, but also comes with its own set of challenges. Everyone is so busy and the conference, though all-consuming for our core team, is just one of each presenter’s many clinical and personal responsibilities. Deadlines slip by (we have learned to be very flexible and forgiving), the first outline may need tweaking, and presenters may come to the first run through needing more guidance than expected.
For this particular Community Conference, you, our Patient Advisory Council members, submitted approximately one quarter of all of the proposals we received. That alone was an exciting accomplishment. But last Thursday was your second presentation prep session and you wowed me once again, causing me to stop and reflect on your journey—as well as my journey alongside you as you navigate this role of patient leaders. You had somehow already found time to work on draft slides—and extremely well thought out ones at that. You already knew, intuitively, what the clinicians in this community want—and need—to hear from you and were able to explain how your presentation would fill a gap. You thought about how to use personal narratives (a big buzzword in health care right now, but something that is essentially just part of who you are) in ways that those twice your age sometimes find challenging. And you graciously accepted feedback, though if I’m being honest, I didn’t have much to add to your plans.
Some of you are 18, some 20, some even younger. You are all busy with exams, friends, dating, college planning, managing your IBD day in and day out, and on top of it all you’re running an active Patient Advisory Council. But you have risen to the challenge, held yourself to the same expectations as others in the community, and in doing so, are showing us all what real partnership with patient colleagues can look like.
Why am I sharing these reflections on LOOP? Because I think it’s so important—and comforting—for those who follow ImproveCareNow and health care in general to know that you are out there. And that you’ll be out there as you enter adulthood and your careers and become even more integral members of the systems that are caring for us all. For now, we are working beside you, providing a little bit of QI expertise, some guidance, a pinch of project management, and here and there a dash of gentle mentoring. But many of us are getting a little older and could eventually (if not already) be facing a life altered by chronic illness. Others of us have small kids who might someday need the kind of care that we are all working together to improve. The comforting part is knowing that whether you become doctors, or teachers, or stay-at-home parents, or mentors for other patients, you will be there helping creating the systems that we all want and need. We know this because you are doing it already…your contributions to improving care for many are coming faster than I would have thought possible, though I now see that was a limitation only of my imagination, not of your abilities and promise.
So yes, these last weeks before our Community Conference are, as always, a few parts exhilarating and a few parts stressful. But more than ever, they are also several parts transformative, because I am watching you become improvement experts and teachers in your own right and it’s transforming my view of the future.
See you in Dallas.