Cancer Loyalty Card Study (CLOCS): feasibility outcomes for an observational case–control study focusing on the patient interval in ovarian cancer

Abstract

ObjectivesOvarian cancer symptoms are often non-specific and can be normalised before patients seek medical help. The Cancer Loyalty Card Study investigated self-management behaviours of patients with ovarian cancer prior to their diagnosis using loyalty card data collected by two UK-based high street retailers. Here, we discuss the feasibility outcomes for this novel research.DesignObservational case–control study.SettingControl participants were invited to the study using social media and other sources from the general public. Once consented, control participants were required to submit proof of identification (ID) for their loyalty card data to be shared. Cases were identified using unique National Health Service (NHS) numbers (a proxy for ID) and were recruited through 12 NHS tertiary care clinics.ParticipantsWomen in the UK, 18 years or older, with at least one of the participating high street retailers’ loyalty cards. Those with an ovarian cancer diagnosis within 2 years of recruitment were considered cases, and those without an ovarian cancer diagnosis were considered controls.Primary outcome measuresRecruitment rates, demographics of participants and identification of any barriers to recruitment.ResultsIn total, 182 cases and 427 controls were recruited with significant differences by age, number of people in participants’ households and the geographical region in the UK. However, only 37% (n=160/427) of control participants provided sufficient ID details and 81% (n=130/160) matched retailers’ records. The majority of the participants provided complete responses to the 24-Item Ovarian Risk Questionnaire.ConclusionsOur findings show that recruitment to a study aiming to understand self-care behaviours using loyalty card data is challenging but feasible. The general public were willing to share their data for health research. Barriers in data sharing mechanisms need to be addressed to maximise participant retention.Trial registration numberISRCTN14897082, CPMS 43323,NCT03994653.

Testing Behavioral Messages to Increase Recruitment to Health Research When Embedded Within Social Media Campaigns on Twitter: Web-Based Experimental Study

“…Nevertheless, the outcomes of this experiment informed the recruitment of the CLOCS participants. The authors gained further understanding of the potential limitations of recruiting participants to CLOCS and successfully recruited 249 participants using Facebook advertisements with the control message [ 47 ]. The cost per participant recruited was between US $12 and $19, which is comparable to and less than other health-related studies with a targeted population [ 48 ].…”