An Innovative Approach to Informing Research: Gathering Perspectives on Diabetes Care Challenges From an Online Patient Community
An Innovative Approach to Informing Research: Gathering Perspectives on Diabetes Care Challenges From an Online Patient Community
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DOI：
10.2196/ijmr.3856
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发表时间：
2015-04-01
影响因子：
2
通讯作者：
Steiner, John F.
中科院分区：
文献类型：
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作者：
Schroeder, Emily B.;Desai, Jay;Steiner, John F.
资助机构和研究人员越来越认识到患者利益相关者参与研究的重要性。尽管呼吁更多的患者参与，很少有研究已经从事了一个基础广泛的在线社区的患者利益相关者在早期阶段的研究发展process.Objective：我们的研究的目的是通过使用基于Web的调查，以了解研究的优先级设置议程收集的重要和困难的方面糖尿病护理的患者成员的社会网络为基础的社区的看法。通过电子邮件向PatientsLikeMe在线糖尿病社区的成员发送了参加基于网络的调查的邀请。该调查询问了定量和定性问题，涉及个人在糖尿病护理、提供者沟通、药物管理、饮食和运动以及与他人关系方面的困难程度。定性的反应进行了分析，使用内容analysis.Results：6219 PatientsLikeMe成员糖尿病患者谁被发送调查邀请，1044（16.79%）打开邀请，320（5.15%的6219; 30.65%的1044）在23天内完成了调查。在320名受访者中，33名（10.3%）报告患有1型糖尿病; 107名（33.4%），2型糖尿病并服用胰岛素; 180名（56.3%），2型糖尿病并服用口服药物或通过改变生活方式控制糖尿病。与2005-2010年国家健康和营养调查糖尿病患者的数据相比，我们的受访者更年轻（平均年龄55.8岁，SD 9.9 vs 59.4岁，SE 0.5）;男性的可能性较小（111/320，34.6% vs 48.4%）;不太可能是种族或少数民族（40/312，12.8% vs 37.5%）。在糖尿病护理的29个潜在挑战中，20%或更多的受访者将19个归类为困难。定量和定性结果均表明，患者面临的最大挑战是生活方式问题（饮食，体力活动，体重和压力）和人际关系问题（尽量不成为他人的负担，获得家人/朋友的支持）。在我们的定量分析中，类似的问题表示跨患者subgroup.Conclusions：生活方式和人际关系的因素是特别具有挑战性的，我们的在线样本的成人1型或2型糖尿病。我们的研究展示了社交网站和在线社区的创新使用，以收集快速，有意义和相关的患者观点，可用于通知研究议程的发展。
Background: Funding agencies and researchers increasingly recognize the importance of patient stakeholder engagement in research. Despite calls for greater patient engagement, few studies have engaged a broad-based online community of patient stakeholders in the early stages of the research development process.Objective: The objective of our study was to inform a research priority-setting agenda by using a Web-based survey to gather perceptions of important and difficult aspects of diabetes care from patient members of a social networking site-based community.Methods: Invitations to participate in a Web-based survey were sent by email to members of the PatientsLikeMe online diabetes community. The survey asked both quantitative and qualitative questions addressing individuals' level of difficulty with diabetes care, provider communication, medication management, diet and exercise, and relationships with others. Qualitative responses were analyzed using content analysis.Results: Of 6219 PatientsLikeMe members with diabetes who were sent survey invitations, 1044 (16.79%) opened the invitation and 320 (5.15% of 6219; 30.65% of 1044) completed the survey within 23 days. Of the 320 respondents, 33 (10.3%) reported having Type 1 diabetes; 107 (33.4%), Type 2 diabetes and taking insulin; and 180 (56.3%), Type 2 diabetes and taking oral agents or controlling their diabetes with lifestyle modifications. Compared to 2005-2010 National Health and Nutrition Examination Survey data for individuals with diabetes, our respondents were younger (mean age 55.8 years, SD 9.9 vs 59.4 years, SE 0.5); less likely to be male (111/320, 34.6% vs 48.4%); and less likely to be a racial or ethnic minority (40/312, 12.8% vs 37.5%). Of 29 potential challenges in diabetes care, 19 were categorized as difficult by 20% or more of respondents. Both quantitative and qualitative results indicated that top patient challenges were lifestyle concerns (diet, physical activity, weight, and stress) and interpersonal concerns (trying not to be a burden to others, getting support from family/friends). In our quantitative analysis, similar concerns were expressed across patient subgroups.Conclusions: Lifestyle and interpersonal factors were particularly challenging for our online sample of adults with Type 1 or Type 2 diabetes. Our study demonstrates the innovative use of social networking sites and online communities to gather rapid, meaningful, and relevant patient perspectives that can be used to inform the development of research agendas.