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!

Communication and information seeking preferences of parents and patients 

One survey question asked respondents to rate how much they use different modes for accessing healthcare information. Generally, respondents listed two main source types: (1) IN-PERSON: physicians, nurses, or other clinical staff and (2) INTERNET-BASED: websites and blogs. Respondents' answers indicated they rarely consult friends or relatives for information about IBD, preferring instead to watch short videos, consult digital resources such as toolkits or, more prominently, use email and social media for connecting with people and information.

Connecting In-Person at the Clinic or Hospital

One person shared “I would want a tool to empower parents when their child is hospitalized to communicate with the house staff and ER doctors who are involved in our child’s care but don’t know us. I would want the hospital staff to know what we worry about with IBD.”

Another parent wrote “We have a very strong relationship with our clinic and a direct line to her [doctor]. Anything she or I have needed has been available to us. I know many patients don’t feel this same way. You have to trust and build mutual relationships.”

One respondent described how “. . . open communication with our primary care doctor and our GI . . . helps enormously.”

Using Online Resources & Community Groups

Parents and patients reported using digital platforms (e.g., web searches, social media) and direct person-to-person platforms (e.g., telephone) to communicate and to seek IBD-related information more generally. One parent shared that “I had an immunization-related question. I googled and asked on FB [Facebook] groups.”

Specifically, parents reported using “Facebook groups, Crohn’s & Colitis Foundation and medical articles.” Social media was noted as a popular source of information, as one respondent noted “Online support group is very helpful. I utilize research medical papers online and follow many scientific groups, docs on Twitter.” However, another respondent found some internet-based resources not credible, “Most questions I’ve researched on the internet which is often inaccurate and depressing to read.”

Many respondents use the telephone to communicate directly with care providers. One parent wrote that “My son was having pain that appeared to be at a higher level than usual. I called our GI and left a message for a nurse” while another recounted when a patient was “. . . prescribed an antibiotic for Strep throat and I called my doctor to ask about the antibiotic he was prescribed. I spoke to the GI nurse.”


Communication and information seeking preferences of parents and patients are highly varied. Respondents described using the telephone and email frequently for getting information from providers quickly, and blogs and websites were popular sources of information outside the clinic. Respondents also identified social media, online webinars, and digital toolkits as important modes for accessing information. Such results are consistent with other research that shows adult caregivers in the United States are highly engaged in finding information, advice, and support online (


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