Shepperd James A, McBride Colleen M, An Weihua, Zhao Jingsong, Pentz Rebecca D, Escoffery Cam, Ward Kevin, Guan Yue
Department of Psychology, University of Florida, Gainesville, FL, United States.
Department of Behavioral, Social and Health Education Sciences, Rollins School of Public Health, Emory University, Atlanta, GA, United States.
J Med Internet Res. 2025 May 6;27:e64228. doi: 10.2196/64228.
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 (t=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.
数字健康工具，如网站，如今大量涌现，以帮助个人管理自身健康。通过用户反馈，我们开发了“你的家庭互联”（YFC）网站，以促进卵巢癌幸存者及其亲属获得基因服务。尽管我们估计一半或更多的人会访问该网站，但只有18%的受邀幸存者这样做了。我们评估了所提供信息的感知相关性、信任以及隐私担忧在多大程度上影响了不访问该网站的决定。
我们设计了一项基于理论的横断面调查，以探讨以下问题：（1）未回复者在多大程度上认可隐私担忧？（2）隐私担忧与收到网站邀请的回忆、确诊后的时间、年龄和种族有关吗？（3）我们能否识别出未回复者的特征，以指导未来干预措施的制定，鼓励受遗传性癌症影响的家庭参与健康网站？
通过将研究ID与佐治亚州癌症登记信息相链接，确定了有资格访问该网站但未回复研究邀请的幸存者样本。该调查简短，包含27个项目，包括对邀请的回忆、对卵巢癌信息的兴趣、使用健康网站的益处、对健康网站的信任以及对大学健康研究的信任。我们进行了因子分析、回归分析、方差分析、相关分析和逻辑回归，以解决研究问题。
在我们发送简短调查问卷的650名未回复者中，368人（56.3%）做出了回复并提供了足够的分析数据。信任量表上2.57的平均回复显著低于量表中点3（t = 11.78，P <.001），这表明未登录的幸存者平均而言不信任健康网站。属于少数种族或族裔群体与对健康网站更信任且怀疑较少有关。只有196名（30.1%）未回复者回忆起了访问该网站的邀请。逻辑回归分析表明年龄是回忆的唯一显著预测因素。用年龄、种族或族裔少数群体身份以及6项隐私担忧进行模型测试，正确分类了58.8%的未回复者，这一成功分类率并不比仅将年龄作为预测因素的逻辑回归分析明显更好。
本研究中的未回复者——尤其是白人未回复者——无论是否回忆起收到网站邀请，都对网站平台持怀疑态度。通过与信息消费者建立关系并与可信赖的组织合作来建立对网络平台的信任的社会营销方法值得进一步研究。
ClinicalTrials.gov NCT04927013；https://clinicaltrials.gov/study/NCT04927013
