镰状细胞病患者对个人健康数据共享的态度,罕见疾病人群研究的范例。

IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES
Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh
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引用次数: 0

摘要

目的:罕见的情况往往是知之甚少,在确定价值治疗可以提供的障碍。本研究探讨了一组罕见血液病,即镰状细胞病(SCD)及其变体患者之间个人健康数据共享的障碍和促进因素。方法:对年龄>18岁的SCD患者进行单一在线焦点小组调查。参与者(N=25)是通过一家总部位于英国的SCD慈善机构招募的。讨论内容逐字记录下来,其中的数据用归纳专题分析加以分析。结果:确定了共享健康数据的五个主要动机:提高认识;知道这一点会帮助别人;列明的影响;财政激励措施;被认为是“有经验的专家”,而不是“需要研究的样本”。障碍包括对“为什么”寻求数据和“谁”受益缺乏明确性。与会者指出,电子健康记录和遗传数据往往"过于详细",因此"禁止"分享。然而,通常隐藏在EHR之外的经验,心态和健康数据是可以接受的,并且被认为是罕见疾病如何治疗患者日常的更好的晴雨表。结论:利用在现实条件下获得的患者经验数据是描绘最准确的需求图景和了解SCD如何影响患者日常生活的关键。研究结果表明,SCD患者不仅仅是健康数据的被动提供者,而是经验丰富的专家。为了欣赏患者观点带来的价值,我们必须重新审视这种现状,修改我们以患者为中心的方法,并将患者重新定义为他们的病情和个人健康数据的高价值管理者,他们至关重要地决定他们分享什么、如何以及何时分享这些数据。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar for Study of Rare Disease Populations.

Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants.

Methods: A single online focus group among those >18 years of age and living with SCD was conducted. Participants (N=25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis.

Results: Five primary motivators for sharing health data were identified: improving awareness; knowing this would help others; evidencing impact; financial incentives; and being recognized as "experts with lived experience" rather than "specimens to be studied." Barriers included lack of clarity regarding "why" data was sought and "who" benefited. Participants stated that electronic health record (EHR) and genetic data were often "too detailed" and therefore "off limits" for sharing. However, experiences, mindset, and well-being data, often hidden from the EHR, were acceptable to share and considered a better barometer of how rare conditions treat patients day-to-day.

Conclusions: Utilizing patient experience data obtained under real-world conditions is key to painting the most accurate picture of needs and understanding how SCD impacts patients' day-to-day lives. Study findings suggest that patients with SCD are not merely passive providers of health data, but rather experts by experience. To appreciate the value that patient perspectives bring, we must revisit this status quo, amending our approach to patient centricity and reframing patients as high-value managers of their condition and personal health data who crucially decide what, how, and when they share it.

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来源期刊
Journal of Patient-Centered Research and Reviews
Journal of Patient-Centered Research and Reviews HEALTH CARE SCIENCES & SERVICES-
自引率
5.90%
发文量
35
审稿时长
20 weeks
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