Developing a patient-led cancer care website, ‘CanCare': what do end users want?

Abstract

The role of the internet, and in particular e-health, in chronic illness is a burgeoning phenomenon but its use to date in cancer care is somewhat limited. In this study an iterative consultative process was undertaken with the aim to develop a cancer care website that was patient-led, facilitated cancer self-management and had the potential to improve communication between patients, family and friends and health care professionals. The process involved multiple demonstrations of an already established base platform (SeeCare ß ) to potential end users (patients, family members and friends and health professionals) to identify required functions of a cancer care specific platform. An exhaustive list of specifications was prioritised and operationalised resulting in a web platform for people affected by cancer that was ready for testing in the clinical setting: CanCare.

Moving Beyond the Friend-Foe Myth: A Scoping Review of the Use of Social Media in Adolescent and Young Adult Oncology

“…cyber bullying when sharing one's cancer story online. 37,54,75 These concerns were largely based on a review of the literature, but not supported by the studies' own findings. Most recommendations were limited to ''being cautious,'' two studies considered it to be the task of clinicians or nurses to monitor AYA's online presence and to educate them about the potential risks and benefits of their social media presence.…”

A Comprehensive Assessment of Cleft Lip and Palate Websites and Patient Education Information

“…This checklist combined the content evaluated in this study with website information that patients found useful in other studies. 45–47 The authors recommend that teams incorporate elements that patients preferred in websites, including developing a website that is user-friendly, mobile-friendly, easy-to-understand, and able to deliver up-to-date health education. 45,46 More specifically, teams should publish comprehensive information related to website maintenance, multilingual cleft lip and palate patient education, team member information, support groups, contact information and more (Table 3).…”

“…45–47 The authors recommend that teams incorporate elements that patients preferred in websites, including developing a website that is user-friendly, mobile-friendly, easy-to-understand, and able to deliver up-to-date health education. 45,46 More specifically, teams should publish comprehensive information related to website maintenance, multilingual cleft lip and palate patient education, team member information, support groups, contact information and more (Table 3). Furthermore, teams should regularly review and update website information on a minimum of an annual basis.…”