I think there's one thing all patients can agree on: No one likes feeling as though they're just a number. We are not cystic fibrosis. We are not our lab values. And treatments aren't the only things we want to do all day. We're human beings who have complex lives, lots to juggle, and priorities that may differ from what our care team members think they should be. Wouldn't it be great if our clinicians realized that?
Well, I've got great news! The Cystic Fibrosis Foundation is committed to this cause and has been working for years researching what helps build strong partnerships between CF patients and families and their care teams and what hinders them. It's important work and the magnitude of those partnerships was showcased at this year's North American Cystic Fibrosis Conference (NACFC) Plenary 3, Partnerships: The Oldest New Idea to Improve Outcomes.
The relationships between people with CF and their care teams are crucial to managing CF well. Research has shown that when clinicians and patients are full partners and acknowledge their shared humanity and respective expertise, outcomes improve. I was fortunate to participate in the discussion, sharing the perspective of a person with CF. The discussion also included Kathryn Sabadosa, mom to a young adult with CF; Cynthia George, senior director of patient engagement at the CF Foundation; and Maren Batalden, M.D., assistant professor at Harvard Medical School and associate chief quality officer at the Cambridge Health Alliance in Cambridge, Mass.
Dr. Batalden, an expert on the subject, shared how strengthening partnerships between people with CF and care teams ultimately improves patient outcomes, telling the audience, “Because the outcomes that really count ... have to do with living an unquantifiable full and meaningful life with cystic fibrosis ... only genuine partnership makes it possible for us to see beyond the numbers, beyond what's the matter with you to what matters to you.”
As I listened to the other panelists, there were moments when I was thinking “YES!” and moments when I had tears in my eyes because I was so touched that these people “get it.”
It's comforting to know there are clinicians and parents who see the value in seeing us as the human beings we are, to know that so many are working hard to make sure we have a seat at the table.
But that doesn't mean people with CF are off the hook here. Nope. If we want our clinicians to be better partners, we as patients and families have to hold up our end of the bargain by communicating what's important to us, sharing the goals that matter most to us, and being honest about what's not working.
It also helps to remember that under their gowns and gloves, our clinicians are humans too. They can have “off” days just like us, they have outside stressors like us, and sometimes they may not have all the answers. But, they're dedicated to helping us and trying their best to keep us healthy.
As Dr. Batalden said, “Sometimes the growth is in humility and learning to listen; sometimes it requires a growth in confidence and courage and learning to speak up. Fortunately, in CF care -- patients and families and care teams have time to grow together, to grow up together if they prioritize it and work on it.”
You can see this awesomeness for yourself below.
After the plenary, Dr. Batalden, Cindy George, and I discussed partnerships in CF care on Facebook Live.
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