Sharing the story of how patient and family engagement can impact IBD care

My name is Ashley and I am the ImproveCareNow Coordinator/Data Analyst for the IBD Team at Nationwide Children's Hospital. My team was challenged by the Engagement Trailblazers to educate our patient population about ImproveCareNow's CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. 

ImproveCareNow Learning Labs are small groups of care centers with key characteristics in common or who are working on similar issues. This structure enables care centers to work more closely together to catalyze improvement and to maintain personal connections as our Network grows. Engagement Trailblazers is a Learning Lab focused on finding ways to connect with all patients and families across ImproveCareNow and to help them access and utilize the IBD resources we create together.

Since our team did not have a way to mass-communicate information to our patients, our challenge was to decide how to best spread the word about CIRCLE to our local IBD families in an efficient and effective manner.

We decided to start by handing out information about CIRCLE to all our newly diagnosed patients and their families when they were in clinic, as well as to patients who were scheduled with our multidisciplinary Annual Visit clinic. By implementing these two small changes, we were able to educate 40+ patients a month utilizing just our social workers and nurse coordinators.

As a result of our early efforts, we documented growth in the number of our local patients subscribing to receive the CIRCLE eNewsletter. However, we knew we were still not reaching all our patients. After working with our IT department for several months, I was able to get a registry created in EPIC which allows me to send quarterly CIRCLE eNewsletters to all our patients and their parents through MyChart. Having this registry has allowed me to quickly and effectively communicate with all our current IBD patients. To date, nearly 100% of our patients and families are aware of ImproveCareNow and the connections, resources and opportunities they can access through the CIRCLE.

By sending quarterly emails to over 750 patients we very easily and went from having 15 patients and/or parents signed up for CIRCLE to having nearly 80 patients/parents from our center signed up. We also saw growth in the number of patients signing up for and/or being interested in the Patient Advisory Council!

Although I do not typically have much patient interaction, I really enjoyed being able to work on this project and help facilitate a method to communicate with our patients in a quick manner! It has proved beneficial in keeping our patients and families up to date with important information and has allowed us to engage with them more. It has also allowed us to solidify our own local engagement and we now have plans to start our own quarterly NCH IBD newsletter in 2022!

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Get #InTheLOOP with more posts by Improvement Coordinators on the blog >>

Get #InTheLOOP with more posts about Engagement on the blog >>

Put in your time and energy on behalf of someone else. No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:

• Invite someone to stay #InTheLOOP with our stories on the blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint (We will be posting 3 more #IgniteTalks - like John's - to the blog over the next couple weeks. By signing up, you'll be the first to know!)

• Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 

• Invite a parent or guardian of a child with IBD to join the Parent Working Group - "I believe I have helped other newly diagnosed families not feel as lost as I was. I believe I am making a difference in my community. And none of this would have happened if I hadn't joined the Parent Working Group." - Carrie

• Invite someone to download our free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint

• Invite someone to Join Our CIRCLE (connect with our welcoming & supportive community, and receive IBD resources, stories, and ICN updates & opportunities)