There is an articulate and thoughtful patient engagement leader from the UK who I follow on twitter named David Gilbert. Like me, you may enjoy reading some of his reflections on the key role of patient leaders in improving care and health systems and think about the lessons for your own work in integrating patient and parent partners into your improvement teams. In ImproveCareNow, we share a lot of writing and reflections from those working as IBD advocates and improvers, but I personally learn a lot from the perspective of those working on very different issues (though it’s amazing how much improving care for IBD actually does have in common with improving care for other chronic conditions like mental illness and even patient safety issues!). David shared a quote that made me think about the recent growth of patient partnership we’ve seen right here on this side of the pond in ImproveCareNow:
“Knowing trees, I understand the meaning of patience. Knowing grass, I can appreciate persistence.” (Hal Borland)
I recently wrote about early lessons learned in the ImproveCareNow Engagement and Leadership Campaign. We were feeling our way, helping a small group of centers figure out what it meant to grow their teams by including more parent and patient partners in planning, carrying out, and evaluating the impact of improvement and awareness activities. While only three months have passed, so much has happened. The ImproveCareNow Community met in March at our Community Conference and we enjoyed watching clinicians, parents, patients, and others work together to share and improve upon ideas for helping more kids with IBD get into remission and stay there.
But the other thing that has happened in this short time is that watching engagement and partnership grow in ICN has become a bit less like patiently watching trees and a bit more like marveling at the persistence of grass. I sat down last week to review ImproveCareNow centers’ monthly narrative reports (in which they share their activities, barriers, and lessons learned), as well as recent activity on social media. I was thrilled to see concrete steps toward partnership taking place at a number of centers that had not yet begun this journey just a few months ago. Here are just a few snippets of what we are seeing emerge:
From ICN Centers’ narrative reports:
“We have sought and received very positive feedback from our parent who attended the meeting and will begin working with her to plan how we can involve her more actively and engage other families.”
“We are meeting with a hospital rep on Friday to work on formalizing a parent group!”
“We had our first meeting with our parent partner!”
“We had a meeting in April with our parent and will conduct monthly meetings with her.”
There is indeed still so much work to do. There are more than 70 care centers in ImproveCareNow and many are still contemplating how best to launch and navigate these new types of partnerships with patients and families. But what I find encouraging is that the stories of progress that are emerging are not concentrated in one type of ImproveCareNow center or in one Learning Lab or in the centers that are known for being quicker to adapt to change. And they are not all stories of one type of engagement…building a mentoring program with patients or inviting a parent to join a QI meeting or having parents complete a survey about areas for improvement. Centers, with their patients, are trying to identify their own specific needs and assets and craft partnership opportunities that build upon them. They realize that not every partner—and not every clinician for that matter—is ready to engage at the same level (be it awareness, participation, contribution, or ownership as described by some of my colleagues in JAMA last year.) And they realize that that’s OK.
Partnering in these new ways can be hard. To extend the “persistence of grass” analogy, sometimes things grow too quickly and we even see weeds emerge. It takes work to get through those patches and get back to things growing the way they should. Patient partners may not feel heard right away—may not feel like full partners. Clinicians may feel worried about sharing their clinic’s opportunities for improvement and may even feel that their expertise—their ideas—carry less weight. As someone who helps the different stakeholders in this system work together, I am the first to admit that it is not always easy and can indeed be scary: We step on toes. We use the wrong words. We don’t always give everyone equal “airtime.” But it’s particularly encouraging to see members of this community openly discussing these concerns and barriers and helping each other come up with ideas for surmounting them.
Three months from now I fully expect we will have more progress to share and will continue to see the fruits of our patience over the years as we have watched this community grow. I am eager to see community members share their stories on this blog and help us learn from and with them.