Using information technology and social networking for recruitment of research participants: experience from an exploratory study of pediatric Klinefelter syndrome.
Using information technology and social networking for recruitment of research participants: experience from an exploratory study of pediatric Klinefelter syndrome.
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DOI：
10.2196/jmir.2286
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发表时间：
2013-03-19
影响因子：
7.4
通讯作者：
Grey M
中科院分区：
文献类型：
--
作者：
Close S;Smaldone A;Fennoy I;Reame N;Grey M
由于父母对研究过程的不信任、隐私问题和家庭时间限制，招募儿科样本进行研究可能具有挑战性。招募患有慢性病和遗传病的儿童可能会使招募过程进一步复杂化。在本文中，我们描述了招募儿童进行研究的方法学挑战，并提供了一个范例，说明如何使用信息技术（IT）策略与社交网络可以改善难以接触的儿科研究参与者。我们对8 - 18岁克氏综合征男孩进行了横断面描述性研究。这项研究对招募儿科参与者提出了独特的挑战。为这项研究编写的征聘活动报告说明了这些挑战。我们回顾了文献，探讨招募儿童使用传统和IT方法进行研究的问题。传统的招聘方法，如小册子，传单在医疗办公室，医生转诊的成功率进行比较，以IT为基础的推广。IT方法包括通过Klinefelter综合征支持小组举行电话会议，基于网络的商业招聘匹配公司的服务，以及开发大学附属研究招聘网站，并在社交网站（Facebook）上使用付费广告。在3个月的时间里，在一家大型城市医院和医院附属诊所分发了150多份招聘手册和传单，并向医生和病人发出了850封信，但没有成功。在同一时期，临床环境中的面对面招募产生了4名（9%）参与者。使用基于网络和社交网络的方法，39（91%）同意参与研究。通过这些方法，5名（12%）来自全国克氏综合征倡导组织，8名（19%）来自当地和电话会议支持组织，10名（23%）来自基于网络的研究招聘计划，16名（37%）来自大学附属招聘网站。在最初的6个月里，大学网站平均每天被浏览2至3次。在一个社交网站上刊登广告一周后，网站访问量增加到每天约63次。在使用所有这些方法接触的112个家庭中，43个（38%）同意参加。拒绝参加的家庭将到研究中心的距离（15，22%）或不愿向其儿子透露Klinefelter综合征诊断（54，78%）作为不参加的原因。利用网络技术加强了对难以接触到的人口的征聘。在这项研究中采用的许多方法中，由Facebook广告支持的大学附属招聘网站似乎是最成功的。研究补助金预算应包括网站注册和维护费用以及社交网站上的在线广告费用。跟踪征聘推荐来源可能有助于规划今后的征聘活动。
Recruiting pediatric samples for research may be challenging due to parental mistrust of the research process, privacy concerns, and family time constraints. Recruitment of children with chronic and genetic conditions may further complicate the enrollment process. In this paper, we describe the methodological challenges of recruiting children for research and provide an exemplar of how the use of information technology (IT) strategies with social networking may improve access to difficult-to-reach pediatric research participants. We conducted a cross-sectional descriptive study of boys between the ages of 8 and 18 years with Klinefelter syndrome. This study presented unique challenges for recruitment of pediatric participants. These challenges are illustrated by the report of recruitment activities developed for the study. We reviewed the literature to explore the issues of recruiting children for research using conventional and IT approaches. Success rates of conventional recruitment approaches, such as brochures, flyers in medical offices, and physician referrals, are compared with IT-based outreach. The IT approaches included teleconferencing via a Klinefelter syndrome support group, services of a Web-based commercial recruitment-matching company, and the development of a university-affiliated research recruitment website with the use of paid advertising on a social networking website (Facebook). Over a 3-month period, dissemination of over 150 recruitment brochures and flyers placed in a large urban hospital and hospital-affiliated clinical offices, with 850 letters to physicians and patients were not successful. Within the same period, face-to-face recruitment in the clinical setting yielded 4 (9%) participants. Using Web-based and social networking approaches, 39 (91%) agreed to participate in the study. With these approaches, 5 (12%) were recruited from the national Klinefelter syndrome advocacy group, 8 (19%) from local and teleconference support groups, 10 (23%) from a Web-based research recruitment program, and 16 (37%) from the university-affiliated recruitment website. For the initial 6 months, the university website was viewed approximately 2 to 3 times per day on average. An advertisement placed on a social networking site for 1 week increased website viewing to approximately 63 visits per day. Out of 112 families approached using all of these methods, 43 (38%) agreed to participate. Families who declined cited either travel distance to the study site (15, 22%) or unwillingness to disclose the Klinefelter syndrome diagnosis to their sons (54, 78%) as the reasons for nonparticipation. Use of Web-based technologies enhances the recruitment of difficult-to-reach populations. Of the many approaches employed in this study, the university-affiliated recruitment website supported by a Facebook advertisement appeared to be the most successful. Research grant budgets should include expenses for website registration and maintenance fees as well as online advertisements on social networking websites. Tracking of recruitment referral sources may be helpful in planning future recruitment campaigns.
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DOI：
10.1177/0884217504272945
发表时间：
2005-01-01
影响因子：
1.8
作者：
McCook, JG;Reame, NE;Thatcher, SS
通讯作者：
Thatcher, SS
影响因子：
3.8
作者：
Glasgow, Russell E.;Strycker, Lisa A.;Osuna, Diego
通讯作者：
Osuna, Diego
影响因子：
5.8
作者：
Bojesen, A;Juul, S;Gravholt, CH
通讯作者：
Gravholt, CH
影响因子：
7.4
作者：
Koo M;Skinner H
通讯作者：
Skinner H
影响因子：
1.7
作者：
Herlihy, A. S.;Halliday, J. L.;Gillam, L. H.
通讯作者：
Gillam, L. H.