Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data.
Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data.
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DOI：
10.2196/jmir.1053
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发表时间：
2008-05-27
影响因子：
7.4
通讯作者：
Massagli MP
中科院分区：
文献类型：
--
作者：
Frost JH;Massagli MP
该项目调查患者对共享通常被视为私人信息（个人健康数据）的反应方式。患者获取个人健康记录的需求不断增长。该记录的主要模型是所有临床相关健康信息的存储库，安全保存并由患者及其医疗保健提供者私下查看。虽然这种类型的记录似乎确实对医患关系产生有益影响，但这些数据的复杂性和新颖性，加上该领域研究的缺乏，意味着个人健康信息对于主要利益相关者（患者）的效用没有得到很好的记录或理解。 PatientLikeMe 是一个在线社区，旨在支持患者之间的信息交流。该网站提供定制的特定疾病结果和可视化工具，以帮助患者了解和分享有关其病情的信息。我们首先描述在线社区的组件和设计。然后，我们识别并分析该平台的用户如何在患者与患者的对话中参考个人健康信息。 被诊断患有肌萎缩侧索硬化症 (ALS) 的患者发布有关其当前治疗、症状和结果的数据。这些数据以图形方式显示在个人健康档案中，并反映在综合社区级症状和治疗报告中。用户在论坛、私人消息以及彼此个人资料上发布的评论中查看和讨论这些数据。我们分析了引用个人级别个人健康数据的会员通信，以确定患者同伴如何在患者与患者之间的交流中使用个人健康信息。 对社区内发布的 123 条评论（约占总数的 2%）样本进行定性分析，揭示了患者成员的各种评论和质疑行为。成员参考数据来找到具有特定经验的其他人来回答特定的健康相关问题，向最有可能从中受益的人提供个人获得的疾病管理知识，并根据共同关心的问题培养和巩固关系。 很少有研究考察患者本人对个人健康信息的使用情况。该项目建议选择在社区内明确共享健康数据的患者如何从这一过程中受益，帮助他们参与可能为疾病自我管理提供信息的对话。我们建议未来的设计使每个患者的健康信息尽可能清晰，自动匹配具有相似条件和使用相似治疗方法的人，并将数据集成到在线平台中进行健康对话。
This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood. PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues. Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other’s profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges. Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns. Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient’s health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.
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