Connected health to address the information and support needs of patients and surviors of young-onset colorectal cancer (CONNECT)

Lead Researcher(s):  Mary de Vera

Lead Institution: University of British Columbia

Co-Investigators: Helen McTaggart-Cowan, Sharlene Gill, Jonathan Loree

ARCC Program Area(s):

Funding Term: 2018-2019

Project Summary:

The aim of our ARCC seed grant proposal was to gain better understanding of the information and support needs of patients and survivors of young-onset colorectal cancer (yCRC) and the role of connected health—that is, technologies that facilitate the collection, flow and use of health information—to address these.

 The research team used patient-oriented research to understand the information and support needs of patients and survivors of yCRC and the role of connected health. The specific project objectives were to: 1) establish patterns of use of connected health resources; 2) identify information gaps and priorities for potential features of connected health resources; and 3) obtain perspectives on use of connected health resources.  An exploratory sequential mixed-methods design was used which involved two separate phases, whereby the quantitative first phase (a cross-sectional survey) informed the subsequent qualitative second phase (one-on-one interviews).

1,125 individuals responded to the survey and the data were divided into two research questions which underpinned the interview guide: 1) what are the health-seeking behaviours among individuals with yCRC (young-onset colorectal cancer, diagnosed under the age of 50 years) and aCRC (average age-onset of colorectal cancer, diagnosed at or over the age of 50 years; and 2) what are the information needs of individuals with yCRC and aCRC.

As part of our survey, respondents self identified as interested in participating in future CRC studies and provided their contact information for follow-up.  Interviews were conducted between April 2019 and August 2019 with 14 participants with yCRC and 20 participants with aCRC.  This rich dataset has resulted in three manuscripts at various stages.

 This research has provided better understanding of the health information seeking behaviours and information needs of individuals with CRC. The direct implications and impact are that the findings can be used to inform the development of resources to better support patients across the CRC care continuum – from diagnosis to survivorship. Indirect impact is equally valuable, for this project the training of highly qualified personnel in CRC outcomes research.