Institute of Molecular Immunology, Klinikum Rechts der Isar, TUM School of Medicine and Health, Technical University of Munich, Munich, Germany.
Institute of History and Ethics in Medicine, TUM School of Medicine and Health, Technical University of Munich, Munich, Germany.
J Med Internet Res. 2024 Aug 26;26:e54034. doi: 10.2196/54034.
Social media platforms are increasingly used to recruit patients for clinical studies. Yet, patients' attitudes regarding social media recruitment are underexplored.
This mixed methods study aims to assess predictors of the acceptance of social media recruitment among patients with hepatitis B, a patient population that is considered particularly vulnerable in this context.
Using a mixed methods approach, the hypotheses for our survey were developed based on a qualitative interview study with 6 patients with hepatitis B and 30 multidisciplinary experts. Thematic analysis was applied to qualitative interview analysis. For the cross-sectional survey, we additionally recruited 195 patients with hepatitis B from 3 clinical centers in Germany. Adult patients capable of judgment with a hepatitis B diagnosis who understood German and visited 1 of the 3 study centers during the data collection period were eligible to participate. Data analysis was conducted using SPSS (version 28; IBM Corp), including descriptive statistics and regression analysis.
On the basis of the qualitative interview analysis, we hypothesized that 6 factors were associated with acceptance of social media recruitment: using social media in the context of hepatitis B (hypothesis 1), digital literacy (hypothesis 2), interest in clinical studies (hypothesis 3), trust in nonmedical (hypothesis 4a) and medical (hypothesis 4b) information sources, perceiving the hepatitis B diagnosis as a secret (hypothesis 5a), attitudes toward data privacy in the social media context (hypothesis 5b), and perceived stigma (hypothesis 6). Regression analysis revealed that the higher the social media use for hepatitis B (hypothesis 1), the higher the interest in clinical studies (hypothesis 3), the more trust in nonmedical information sources (hypothesis 4a), and the less secrecy around a hepatitis B diagnosis (hypothesis 5a), the higher the acceptance of social media as a recruitment tool for clinical hepatitis B studies.
This mixed methods study provides the first quantitative insights into social media acceptance for clinical study recruitment among patients with hepatitis B. The study was limited to patients with hepatitis B in Germany but sets out to be a reference point for future studies assessing the attitudes toward and acceptance of social media recruitment for clinical studies. Such empirical inquiries can facilitate the work of researchers designing clinical studies as well as ethics review boards in balancing the risks and benefits of social media recruitment in a context-specific manner.
社交媒体平台越来越多地被用于招募临床研究的患者。然而,患者对社交媒体招募的态度还没有得到充分的探索。
本混合方法研究旨在评估乙型肝炎患者对社交媒体招募的接受程度的预测因素,乙型肝炎患者在这种情况下被认为是特别脆弱的人群。
使用混合方法,我们的调查假设是基于对 6 名乙型肝炎患者和 30 名多学科专家的定性访谈研究制定的。对定性访谈分析进行了主题分析。为了横断面调查,我们还从德国的 3 个临床中心招募了 195 名乙型肝炎患者。有判断力的成年乙型肝炎患者,理解德语,并且在数据收集期间访问了 3 个研究中心之一,有资格参加。使用 SPSS(版本 28;IBM 公司)进行数据分析,包括描述性统计和回归分析。
基于定性访谈分析,我们假设有 6 个因素与社交媒体招募的接受程度相关:在乙型肝炎背景下使用社交媒体(假设 1)、数字素养(假设 2)、对临床研究的兴趣(假设 3)、对非医学(假设 4a)和医学(假设 4b)信息源的信任、将乙型肝炎诊断视为秘密(假设 5a)、对社交媒体背景下数据隐私的态度(假设 5b)和感知耻辱感(假设 6)。回归分析显示,乙型肝炎社交媒体使用程度越高(假设 1),对临床研究的兴趣越高(假设 3),对非医学信息源的信任度越高(假设 4a),乙型肝炎诊断的保密性越低(假设 5a),对社交媒体作为临床乙型肝炎研究招募工具的接受程度越高。
这项混合方法研究提供了关于乙型肝炎患者对临床研究招募的社交媒体接受程度的第一个定量见解。该研究仅限于德国的乙型肝炎患者,但旨在成为评估社交媒体招募对临床研究的态度和接受程度的未来研究的参考点。这种实证研究可以帮助研究人员设计临床试验,并帮助伦理审查委员会在特定背景下平衡社交媒体招募的风险和收益。