Patients Know Best: Qualitative Study on How Families Use Patient-Controlled Personal Health Records.
Patients Know Best: Qualitative Study on How Families Use Patient-Controlled Personal Health Records.
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DOI：
10.2196/jmir.4652
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发表时间：
2016-02-24
影响因子：
7.4
通讯作者：
Blandford A
中科院分区：
文献类型：
--
作者：
Schneider H;Hill S;Blandford A
自我管理技术，如病人控制的电子健康记录（PCEHR），有可能帮助人们管理和科普疾病。本研究旨在调查患者家属与PCEHR合作的生活经历。我们进行了一项半结构化的定性实地研究，患者家属和临床医生在英国的一家儿童医院，使用PCEHR（患者知道最好的）。所有家庭都在管理患有严重慢性病的儿童的健康，这些儿童通常受到多名临床医生的照顾。随着数据收集和分析的进展，很明显，虽然大部分文献假设患者愿意并等待对他们的健康管理（例如，PCEHR）承担更多责任和控制，但我们研究中只有少数参与者以这种方式回应。他们的经验与PCEHR是不同的，强烈塑造他们的应对方式。应对理论认为，患者的信息需求取决于其应对方式，即从接近型到回避型的应对方式。我们确定了3组患者家庭和一个离群值，区分他们的应对方式和PCEHR的使用。我们将离群值称为控制（方法导向，高度积极使用PCEHR），将3组称为合作（方法导向，积极使用PCEHR），合作（回避导向，不太积极使用PCEHR）和回避（非常回避导向，不积极使用PCEHR）。PCEHR更能满足控制者和合作者的需求，而不是合作者和回避者的需求。我们借鉴了自我决定理论，提出PCEHR设计可能更好地满足回避型用户的需求的方法。此外，我们强调需要家庭也放弃控制的时候，并提出PCEHR设计可能支持更好的控制分配的方式，基于有效的培训，易用性，数据安全机制的可理解性，及时提供信息（认识到人们的不同需求），个性化的使用，并通过PCEHR与临床医生轻松互动。
Self-management technologies, such as patient-controlled electronic health records (PCEHRs), have the potential to help people manage and cope with disease. This study set out to investigate patient families’ lived experiences of working with a PCEHR. We conducted a semistructured qualitative field study with patient families and clinicians at a children’s hospital in the UK that uses a PCEHR (Patients Know Best). All families were managing the health of a child with a serious chronic condition, who was typically under the care of multiple clinicians. As data gathering and analysis progressed, it became clear that while much of the literature assumes that patients are willing and waiting to take more responsibility for and control over their health management (eg, with PCEHRs), only a minority of participants in our study responded in this way. Their experiences with the PCEHR were diverse and strongly shaped by their coping styles. Theory on coping identifies a continuum of coping styles, from approach to avoidance oriented, and proposes that patients’ information needs depend on their style. We identified 3 groups of patient families and an outlier, distinguished by their coping style and their PCEHR use. We refer to the outlier as controlling (approach oriented, highly motivated to use PCEHR), and the 3 groups as collaborating (approach oriented, motivated to use PCEHR), cooperating (avoidance oriented, less motivated to use PCEHR), and avoiding (very avoidance oriented, not motivated to use PCEHR). The PCEHR met the needs of controller and collaborators better than the needs of cooperators and avoiders. We draw on the Self-Determination Theory to propose ways in which a PCEHR design might better meet the needs of avoidance-oriented users. Further, we highlight the need for families to also relinquish control at times, and propose ways in which PCEHR design might support a better distribution of control, based on effective training, ease of use, comprehensibility of data security mechanisms, timely information provision (recognizing people’s different needs), personalization of use, and easy engagement with clinicians through the PCEHR.