In December 2021, our team's ICN Coordinator/Data Analyst - Ashley Kiel - shared her experience as an essential, but non-clinical team member involved in the challenge we undertook to educate our local IBD community about the ImproveCareNow CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. Now, I'd like to add my perspective, as a pediatric GI doc, on why engaging with patients and families is so important, how we have been pursuing engagement efforts over the past year, and what others can steal shamelessly from our experience.

The value of engagement

As a pediatric GI doc, the engagement of patients and parents in every step of their care is incredibly important. At the individual level, I can be a better doctor and do a better job creating personalized treatment plans when I actively engage with patients and families and understand their preferences and values. From a center level, engagement of patients and families ensures that our IBD team is getting patients and families what they need, when they need it, in the way they want it! For example, the engagement of parents at our center lead to the creation of an IBD parent mentor program, where parents or other caregivers can be linked with other IBD parents trained to provide support and peer mentorship. From the perspective of research, engagement is important to make sure we are studying the problems most important to patients and families, and developing interventions that will best improve outcomes patients and families care about.

Our engagement efforts over the past year

As Ashley described, our involvement with the Engagement Trailblazers encouraged us to try to reach every patient and family with information about ICN and its resources, support, and opportunities for involvement. Being part of the trailblazers group propelled us forward by encouraging us to be creative about interventions. Not only did we educate patients and families about CIRCLE verbally at face-to face and telemedicine visits, but also through paper flyers, via our parent mentors, and through group patient-portal messages sent via the newly created IBD registry within our electronic medical record (EMR). Sharing our challenges and successes within this group helped us improve and hopefully, helped others too!

Key learnings - steal shamelessly!

We learned that the whole team is important to improving engagement. This includes clinical and non-clinical staff (as Ashley highlighted). We also learned that using the patient portal (MyChart), which is frequently used for clinical care in our patients, was an excellent and efficient way to sky-rocket our engagement efforts.


Get #InTheLOOP with more posts by Clinicians 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)

Built by Veracity Media on NationBuilder