In these turbulent times, with the ever-changing landscape of COVID-19 unfolding around us, the IBD team at Stanford Children’s Health has continued to prioritize community engagement; making the shift to offering virtual events and interactions that have provided their patients and families with uninterrupted clinical care, reliable sources of IBD-related information, and the ability to stay connected, ask questions and develop valuable coping skills to help navigate this unpredictable time successfully.

Their community engagement work was previously shared during our Fall Live Online Community Conference and will be highlighted again during our December 2 Virtual Community Conference (RSVP to join). Alison Kotzen RN, MSN, C-PNP, wrote the following about her team’s engagement efforts during the time of COVID-19.

As we have shared in previous #WINWIN posts, the ICN Engagement Team is committed to gathering and effectively sharing information, knowledge and know-how that may help patients with IBD and their families. In a 2019 survey the Engagement Team asked the ICN Community to share how they prefer to connect, find and receive information. Their responses are helping us learn how to get the right information to the right people at the right time on their IBD journey. In this post we are sharing feedback related to communication and information seeking preferences of patients and patients.

This is a work in progress. Our ultimate goal is to get the right information, to the right people, at the right times and using a method that works for them. We want patients and families to have what they need, when the need it! If you have thoughts to share on these topics, please contact us so we can learn from you!

In February 2019 our Engagement Team asked the ICN Community to share what information, knowledge and know-how could help others living with IBD, and how best to get those resources into the hands of people who need them. Two weeks ago we shared feedback and resources related to “Information and resources to support psychosocial health.” Today, we're sharing about "Information on financial and insurance coverage issues."

We know there is more work to do, and this is the start of identifying resources that can help our community. If you know of any resources that address the topics shared in this post, please contact us so we can share seamlessly.

In February 2019 our Engagement Team asked the ICN Community to share what information, knowledge and know-how could help others living with IBD, and how best to get those resources into the hands of people who need them. Two weeks ago we shared feedback and resources related to “Information and resources surrounding different facets of IBD.” Today, we're sharing feedback and resources related to "Information and resources to support psychosocial health."

We know there is more work to do, and this is the start of identifying resources that can help our community. If you know of any resources that address the topics shared in this post, please contact us so we can share seamlessly.

In February 2019, the ImproveCareNow Engagement Team surveyed CIRCLE community members to identify information, knowledge & know-how that could benefit others living with IBD and their families/caregivers. Specifically, we hoped to uncover resources and methods of sharing that would help us identify gaps in resources and information ImproveCareNow currently provides to the IBD community.

Seventy people took our survey, including patients with IBD and their parents/caregivers. We learned a great deal through our analysis of the survey results. At a high level, we were able to identify four key areas of need:

• parents and patients want information and resources surrounding different facets of IBD, including:
  • general disease information
  • information on treatment
  • resources for helping them manage IBD
• respondents want information and resources to support psychosocial health, including:
  • to promote emotional wellbeing
  • access to patient and caregiver support groups
• respondents expressed difficulty with insurance coverage and financial issues
• respondents shared diverse preferences for how and where they receive information

Below we will dive more deeply into the area of “Information and resources surrounding different facets of IBD.” Where possible, we will link directly to useful resources that may help address some of the specific needs expressed through the survey. We know there is more work to do, and this is the start of identifying resources that can help our community. If you know of any resources that address these topics, please contact us so we can share seamlessly.

My name is Ian and I’m a clinical research coordinator at the University of Vermont (UVM) Children’s Hospital. I work 20% of the time on ImproveCareNow (ICN), and the rest is spent supporting a variety of other pediatric clinical trials at UVM Children’s. Our pediatric GI team has been participating in ICN since 2007 and we are continuously looking for ways to improve the health and experiences of the kids we care for. Recently, with support from the ICN Engagement team, we volunteered to try and make improvements to our process for getting our patients and families aware of and taking advantage of the benefits of our ImproveCareNow participation. Last August we began testing ways to improve the very first step in this engagement process, Awareness.

The MassGeneral Hospital for Children (MGHfC) Parent/Patient Advisory Team (PPAT) was honored to be selected for an ImproveCareNow (ICN) Patient and Parent Innovation Fund award in the fall of 2017. As a team of parents, patients and healthcare providers, this award enabled us to work together to provide valuable educational programs aimed at increasing and family knowledge of IBD, and much-needed opportunities for patients and families to network with others to share information, knowledge and know-how.

As a team, we have chronicled our collaborative, year-long journey of working together to increase the number of participants enrolled in our PPAT engagement group and formalize a model that others across the ICN Network can steal shamelessly. Our project has culminated in a “How to Manual”, which we are excited to continue sharing across the ICN Network at our upcoming Virtual Community Conference. This manual shares our lessons learned, challenges, tips, and strategies to achieve success in growing a local engagement program that will connect, support, and engage IBD patients and their families. Our hope is that the manual will serve as a catalyst to help other centers achieve similar partnerships, which will result in improved IBD care and outcomes.

Transition of care is a hot topic in our Pediatric Gastroenterology division. We have many patients with lifelong diagnoses, such as Inflammatory Bowel Disease, who will eventually need to move to adult care. In the past, transition and transfer of care have been a bit like an elephant in the room as patients near their 18^th birthday. Questions are nervously broached by parents at the end of office visits: “How much longer will you see my son/daughter? Where do we go? What if we don’t want to see an adult doctor?” These encounters made our team realize that we needed to do a better job preparing patients and their parents for transition and transfer of care. The question was, where do we start?

My brother has ulcerative colitis. For too long, I watched him suffer without access to the things he needed (education about the disease, a treatment that worked and that he was on board with, support and understanding). My brother, and everyone living with IBD, deserves to have access to all the tools, information, resources and support needed to not just survive with IBD – but to thrive.

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.