Townsend Anne, Amarsi Zubin, Backman Catherine L, Cox Susan M, Li Linda C
Arthritis Research Centre of Canada, Vancouver, BC, Canada.
J Med Internet Res. 2011 Oct 13;13(4):e84. doi: 10.2196/jmir.1752.
While use of the Internet is increasingly widespread in research, little is known about the role of routine electronic mail (email) correspondence during recruitment and early volunteer-researcher interactions. To gain insight into the standpoint of volunteers we analyzed email communications in an early rheumatoid arthritis qualitative interview study.
The objectives of our study were (1) to understand the perspectives and motivations of individuals who volunteered for an interview study about the experiences of early rheumatoid arthritis, and (2) to investigate the role of emails in volunteer-researcher interactions during recruitment.
Between December 2007 and December 2008 we recruited 38 individuals with early rheumatoid arthritis through rheumatologist and family physician offices, arthritis Internet sites, and the Arthritis Research Centre of Canada for a (face-to-face) qualitative interview study. Interested individuals were invited to contact us via email or telephone. In this paper, we report on email communications from 12 of 29 volunteers who used email as their primary communication mode.
Emails offered insights into the perspective of study volunteers. They provided evidence prospectively about recruitment and informed consent in the context of early rheumatoid arthritis. First, some individuals anticipated that participating would have mutual benefits, for themselves and the research, suggesting a reciprocal quality to volunteering. Second, volunteering for the study was strongly motivated by a need to access health services and was both a help-seeking and self-managing strategy. Third, volunteers expressed ambivalence around participation, such as how far participating would benefit them, versus more general benefits for research. Fourth, practical difficulties of negotiating symptom impact, medical appointments, and research tasks were revealed. We also reflect on how emails documented volunteer-researcher interactions, illustrating typically undocumented researcher work during recruitment.
Emails can be key forms of data. They provide richly contextual prospective records of an underresearched dimension of the research process: routine volunteer-researcher interactions during recruitment. Emails record the context of volunteering, and the motivations and priorities of volunteers. They also highlight the "invisible work" of research workers during what are typically considered to be standard administrative tasks. Further research is needed to fully understand the role of routine emails, what they may reveal about volunteers' decisions to participate, and their implications for research relationships-for example, whether they have the potential to foster rapport, trust, and understanding between volunteer and researcher, and ultimately shift the power dynamic of the volunteer-researcher relationship.
虽然互联网在研究中的应用越来越广泛，但对于招募期间和早期志愿者与研究人员互动过程中常规电子邮件通信的作用，人们了解甚少。为了深入了解志愿者的观点，我们在一项早期类风湿性关节炎定性访谈研究中分析了电子邮件通信。
我们研究的目的是：（1）了解自愿参与早期类风湿性关节炎经历访谈研究的个人的观点和动机；（2）调查电子邮件在招募期间志愿者与研究人员互动中的作用。
在2007年12月至2008年12月期间，我们通过风湿病学家和家庭医生办公室、关节炎相关网站以及加拿大关节炎研究中心招募了38名早期类风湿性关节炎患者，进行一项（面对面）定性访谈研究。感兴趣的个人被邀请通过电子邮件或电话与我们联系。在本文中，我们报告了29名主要通过电子邮件作为沟通方式的志愿者中的12人的电子邮件通信情况。
电子邮件为了解研究志愿者的观点提供了见解。它们前瞻性地提供了早期类风湿性关节炎背景下招募和知情同意的证据。首先，一些人预期参与对自己和研究都有互利之处，这表明志愿服务具有互惠性。其次，参与该研究的强烈动机是获得医疗服务的需求，这既是一种寻求帮助的策略，也是一种自我管理的策略。第三，志愿者对参与表达了矛盾心理，比如参与对他们有多大益处，与对研究更广泛的益处相比。第四，揭示了在应对症状影响、医疗预约和研究任务方面的实际困难。我们还反思了电子邮件如何记录志愿者与研究人员的互动，说明了招募期间研究人员通常未记录的工作。
电子邮件可以成为关键的数据形式。它们为研究过程中一个研究较少的维度提供了丰富的背景前瞻性记录：招募期间志愿者与研究人员的常规互动。电子邮件记录了志愿服务的背景、志愿者的动机和优先事项。它们还突出了研究人员在通常被视为标准行政任务期间的“无形工作”。需要进一步研究以充分了解常规电子邮件的作用、它们可能揭示的志愿者参与决策的情况以及它们对研究关系的影响——例如，它们是否有潜力促进志愿者与研究人员之间的融洽关系、信任和理解，并最终改变志愿者与研究人员关系中的权力动态。
