Posted by ImproveCareNow™ on January 23, 2025
ImproveCareNow (ICN) believes that when patients and parents/caregivers are true partners in the design and delivery of IBD care, we can achieve even better outcomes. One way our Learning Health Network fosters this partnership with our pediatric IBD families is through a Community Conference scholarship program. Scholarships cover the full costs for patients and parents/caregivers to attend our in-person meetings.
Medical conferences have traditionally been designed just for medical professionals. Shifting this paradigm - offering enriching, content-focused meetings that engage and meet the needs of a diverse audience - is both a challenge and an opportunity. In ICN we are committed to continuously improving our conferences to better include all members of our community. Patients and parents/caregivers not only attend as full participants in our conferences, many of our sessions are also co-created and presented by these vital partners.
Below are some reflections shared by patient & parent/caregiver attendees from our Fall 2024 Community Conference. If you would like to support this important work and bring more IBD family voices to our learning events, please make a donation to the Richard B. Colletti Family Fund.
What is a highlight of the Community Conference?
The conversations and exchanges are incredibly valuable and these are what stand out. Progress happens with real in-person relationships across stakeholder groups. – Ildiko M
I feel supported, valued, respected and heard when I attend the ICN Community Conference. The IBD parent journey is often challenging, worrisome and lonely; what re-fills my cup over the two-day conference comes from discussions with fellow parents, patients and clinicians, conference presentations, and the general vibe of unconditional support that exudes from the community. – Erin S
I absolutely loved the sense of collaboration that was evident at the conference. People from so many different perspectives came together to work towards a common cause, and some findings and ideas that I found fascinating were presented. - Ashley B
What did you learn at the Community Conference that you intend to use when you return home?
I have learned the importance of the parent perspective! I felt hesitant to speak up too much with my advocacy - until this conference demonstrated how key the parent and patient perspectives really are! – Emily G
One thing I learned is just how much our voices matter and can make a difference. I support other families doing dietary therapy and I learned about new resources to help families especially when they are new to the diagnosis. – Leah M
I think as a patient, it’s hard to put ourselves into the providers shoes at times. Seeing all the research that they’re doing to help us makes me want to help too. It makes me want to get more involved and stay informed on new findings. – Hannah M
What would you tell other patients/caregivers considering participating in ImproveCareNow or attending their first Community Conference?
Joining ICN is a significant step towards making a difference for your child and others in the IBD community. Your voice matters, and your involvement can bring hope and healing to many. Don't hesitate to get involved! – Maria L
I tell patients/caregivers that joining learning health networks like ICN, or attending a conference for the first time can be life changing. At least it was for me! I found other parents/ caregivers who were going through the same things I was, facing similar challenges, some more difficult and some not as complex. I found new best friends. I found a group who has taught me to be a strong advocate, to speak up, be strong, ask for help, and take care of myself. The people I have met in ICN have made this IBD journey much easier to navigate and much less lonely. – Jane W
As a patient, I loved the community that ImproveCareNow has given me. I have found people from all across the country that I can relate to and talk about IBD with, and they truly are such an amazing support system. Not only that, but I have also met physicians, nurses, social workers, psychologists and so many more important people who all strive to work towards improving the care of IBD patients. At conference, you also get to learn about some of the most recent advancements made towards IBD care and participate in valuable discussions which I found to be so engaging and interesting. I had the best time at conference! – Ashley B
Don’t hold back! Tell them what you really think, because the providers in the room need to know what the patient experience is like to guide their interventions. This is not the time to be afraid to challenge the status quo. – Seth K
It’s AMAZING!! The environment, the people, the knowledge, it’s all great and very informative. – Autumn E
There is a community out there waiting for you. You aren’t alone in your struggle, and you don’t need to face it by yourself. – Justin H
ICN is proud to be able to bring many different voices and perspectives together to improve, innovate and inspire! If you are a patient or parent/caregiver and would like to get involved and join our Learning Health Network, please consider signing up for our Patient Advisory Council (PAC) or our Parent/Family Advisory Council (PFAC):
If you would like to support ICN's continued ability to bring patients and parents/caregivers to our in-person Community Conferences at no cost, please make a donate to the Richard B. Colletti Family Fund:
Also, we hope you will plan to join us at our next Live Online Community Conference on April 24, 2025 - registration for this fully virtual event is set to open on January 30.