Thanks to the generosity of the ImproveCareNow community, and the hard work and dedication of our parent and patient partners, 30 members of the Parent Working Group and Patient Advisory Council joined us at the Fall 2018 Community Conference in Chicago. It’s been two months since we returned to our respective communities, and some parent and patient partners wanted to share their reflections on what they learned while at the conference and how they are using this at their local center to improve care.

What did you learn at the ICN Community Conference?

Chris Jofriet: Attending the ICN community conference reinforced my belief that many different perspectives can shed light on problems and help create solutions. 

Kathy Rygg: There were a number of sessions I found valuable, such as the engagement sessions with Chris Keck; the plenary session on the financial implications of IBD; and the PWG sessions. 

Becky Woolf: I learned about Transition and Transfer regarding IBD, insurance/healthcare, engagement, team work, accommodations, and much more. 

Natalie Beck: I learned more about the transition and transfer process/groups and projects. 

Rosa Kelekian: It was incredibly useful to hear other centers' ideas for engaging new parents/patients locally. I learned so much about the different methods of engagement, how to keep members active, and how to improve support! 

Lexa Fenster: I learned more about getting people involved at local care centers, and different ways to engage people. It was a great way to connect with people from other care centers and learn from each other.

PAC member: I learned a little more about publishing papers in QI.

Why was this valuable to you in your work as a parent or patient partner? What will you take back to your local care center and/or the PWG/PAC?

Chris: This is valuable because it creates positive energy and hope for the future. I have a greater understanding of ICN collaboration that I can bring back to my center.

Kathy: By learning what other parents/patients are working on at their care centers, I'm able to bring back new ideas, define and tweak what we're already doing, and how to incorporate new social media tools to make our communication more effective at both the local and national levels. 

Becky: As a patient, I need to be prepared to transition and transfer, go to college, and manage my disease myself. I'll be trying to work with my center about transitioning patients.

Natalie: As a patient attending conferences is so meaningful because I get to learn so much information, as well as give information, while connecting face to face with the providers who want to change healthcare as much as I do

Rosa: I've been working on starting a patient/family group at my center, so it was great to get a sense of how other centers have successfully brought more families on board! 

Lexa: This was valuable because it is important to get more people involved and further educate ourselves on IBD. 

PAC member: This was useful for publishing future PAC or center engagement initiatives. 

Is there anything else you would like to share about your experience?

Chris: As a parent of a PAC member, I also discovered at the Conference the impact that my son has had on the community. I saw firsthand how the PAC empowered him to make a difference for himself and others. 

Kathy: Being able to develop relationships and share ideas face to face with other parents, patients, and clinicians is a priceless opportunity that the community conference provides. 

Natalie: I love becoming closer with the professionals in healthcare and learning from them when I wouldn't have an opportunity to build a relationship or learn this otherwise. I love to connect with patients who I only get to talk to virtually otherwise and I've made many lasting friendships! 

Rosa: As always, it's incredible that organizations like ICN exist, and highlight the experiences of patients and families. Thank you for including us in community conferences!!

Becky: I got a lot more connected with the ICN community and got to meet new people. 


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