Virtual Resources and Opportunities to Empower and Educate Patients and Advocates Along the Colorectal Cancer Continuum

Authors:

Sharyn Worrall (Presenter)
Fight Colorectal Cancer

Dan Canfield, Fight Colorectal Cancer
Andrea Dwyer, Fight Colorectal Cancer
Anjee Davis, Fight Colorectal Cancer
Danielle Burgess, Fight Colorectal Cancer
Andrew Wortmann, Fight Colorectal Cancer
Keavy McAbee, Fight Colorectal Cancer

Public Health Statement: While studies show that cancer patients typically receive information at the time of diagnosis, others suggest that resources do not extend through the cancer continuum and that there is a gap in access to much needed resources.

Purpose: Colorectal cancer (CRC) is the second leading cause of cancer-related deaths among men and women in the U.S. and responsible for over 50,000 deaths per year. While studies show that cancer patients typically receive information at the time of diagnosis, others suggest that resources, support and an avenue for engagement do not extend through the cancer continuum and that there is a gap in access to psychosocial and survivorship care. The accessibility of information through web-based applications can provide greater opportunities to become educated, engaged and empowered. Fight Colorectal Cancer (Fight CRC) is a virtual patient advocacy organization leading the way in providing a robust channel for addressing the unique needs of the CRC community through innovative, medically reviewed resources.

Methods/Approach: In the Spring of 2016, an online survey was piloted to understand how online resources are perceived, utilized in addition to inquiring about additional missing topic areas needing to be addressed. Participants including patients/survivors, caregivers, medical professionals, and others, who had downloaded, or requested, any patient education resource were contacted via email and invited to participate in the survey.

Results: Of the individuals (n=273) who participated in the survey, 34% visit the website to engage in advocacy, 82% to learn about current research and 90% to obtain resources and general information related to colorectal cancer. Participants request resources on many topics, but the top three requests are exercise and nutrition (50%), treatment options (48%) and psychosocial health (42%). Of the resources offered, close to 90% of respondents (n=222) claimed to be satisfied or extremely satisfied with the content provided, 88% have learned something new (n=222) and 70% have applied the information to their specific needs. In addition, 39% of respondents have shared information gained from these resources with their medical providers.

Conclusions/Implications: Fight CRC has created a robust library of resources that provides free access to information supporting cancer patients, survivors and caregivers around the globe. While our small sample for the survey was self-selected, we gain clear direction for how to continue to refine and improve topic areas covered.