Patients, parents and doctors – we are all humans and want to know each other as such. This has been a common theme that I have seen emerge from Community Conference pre-work and in conversations I’ve had around engagement. Patients and parents want to connect and view their care providers as real people; they want their care team to know who they are beyond just a diagnosis. The focus is on feeling normal and being connected, and how that is defined differs a bit in each case.

Behind the scenes, I hear our Mott Team talk about things like Johnny’s love of soccer and desire for a pet turtle. In interviewing patients I’ve heard things like: “I love that Dr. Neef showed me a picture of her puppy” and “it was so meaningful when our doctor had pizza with our son while he was inpatient, it really showed us how much he cares.” When I spoke with our patient advocate, PAC Co-Chair Bianca, I asked her what she found surprising through the process of engagement. Her response was really important to me. She told me she was surprised by how much goes on behind the scenes of care. It was a light-bulb moment for me. I began to wonder what would be the best way to bring a group of parents and patients behind the scenes, to show them what goes on. And then ask them to help us continue to do better at improving care.


The reality is clinic visits are very busy and it is important that the care team, patient and family accomplish everything necessary to effectively treat and manage IBD. So even though from an organizational standpoint, the clinic visit seems like the perfect opportunity to talk to parent and patient partners about this opportunity to go behind the scenes – there often isn’t time to have the conversation. Couple that difficulty with the overwhelming thought of engaging even 20 out of our 500 patients and I can tell you I began to feel like it was impossible. Then I met the Wheelers. The Wheelers, I am thankful to share, were happy to hear my ramble about how we need them to help us make a difference. And they wanted to get involved.


In ImproveCareNow we are taught to use Quality Improvement to identify gaps in care, and close them – to make improvements. One of the most important lessons a QI practitioner can learn is to “start small.” True to my QI training (shout out to all our great QI coaches) the Wheelers and I sat down to think about a small change we could test to work towards this larger goal of engagement. We plotted our course in measurable aims and PDSA cycles. Our efforts were supported by the ICN co-production and engagement campaign team and this helped us think about everything in a process-driven way.


This was the birth of our first engagement meeting.




This is post #2 in a three-part series. Read the first post here.

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