Trust and Privacy Concerns Among Cancer Survivors Who Did Not Visit a Research Website Offering Free Genetic Counseling Services for Families: Survey Study

TL;DR

A survey study found that cancer survivors were skeptical about health websites, with trust and privacy concerns affecting their decision not to use a free genetic counseling website.

Contribution

The study identifies trust and privacy concerns as barriers to engagement with health websites among cancer survivors.

Findings

Only 18% of invited cancer survivors accessed the health website.

Nonresponders showed low trust in health websites, with a mean trust score below the midpoint.

Age was the strongest predictor of recalling the website invitation.

Abstract

Digital health tools, such as websites, now proliferate to assist individuals in managing their health. With user input, we developed the Your Family Connects (YFC) website to promote access to genetic services for survivors of ovarian cancer and their relatives. Although we estimated that half or more would access the website, only 18% of invited survivors did so. We assessed the extent to which perceived relevance of the information provided, trust, and privacy concerns influenced decisions not to access the website.

We designed a theory-based cross-sectional survey to explore the following questions: (1) To what extent did nonresponders endorse privacy concerns? (2) Were privacy concerns associated with recall of receiving the website invitation, time since diagnosis, age, and race? (3) Could we identify profiles of nonresponders that would guide the development of future interventions to encourage engagement in health websites for families affected by inherited cancers?

A sample of survivors who were eligible to access the website yet did not respond to the study invitation was identified by linking study IDs to the Georgia Cancer Registry information. The survey was brief and contained 27 items, including recall of the invitation, interest in ovarian cancer information, benefits of using health websites, trust in health websites, and trust in university-based health research. We conducted factor analyses, regression analyses, ANOVA, correlation analyses, and logistic regression to address research questions.

Of the 650 nonresponders to whom we sent the short survey, 368 (56.3%) responded and provided sufficient data for analysis. The mean response of 2.57 on the trust scale was significantly below the scale midpoint of 3 (t360=11.78, P<.001), suggesting that survivors who did not log on were on average distrustful of health websites. Belonging to a racial or ethnic minority group was associated with being more trusting and less skeptical about health websites. Just 196 (30.1%) nonresponders recalled the invitation to visit the website. Logistic regression analysis indicated that age was the only significant predictor of recall. Testing a model with age, racial or ethnic minority status, and the 6 privacy concerns correctly classified 58.8% of nonresponders, a rate of successful classification that was not appreciably better than a logistic regression analysis that included only age as a predictor.

The nonresponders in the present study—particularly the White nonresponders—were skeptical of website platforms regardless of whether they recalled receiving a website invitation or not. Social marketing approaches geared toward building trust in web platforms by building a relationship with an information consumer and in collaboration with trusted organizations warrant further investigation.

ClinicalTrials.gov NCT04927013; https://clinicaltrials.gov/study/NCT04927013

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