Riordan Fiona, Papoutsi Chrysanthi, Reed Julie E, Marston Cicely, Bell Derek, Majeed Azeem
NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom.
NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom.
Int J Med Inform. 2015 Apr;84(4):237-47. doi: 10.1016/j.ijmedinf.2015.01.008. Epub 2015 Jan 20.
The development of Electronic Health Records (EHRs) forms an integral part of the information strategy for the National Health Service (NHS) in the UK, with the aim of facilitating health information exchange for patient care and secondary use, including research and healthcare planning. Implementing EHR systems requires an understanding of patient expectations for consent mechanisms and consideration of public awareness towards information sharing as might be made possible through integrated EHRs across primary and secondary health providers.
To explore levels of public awareness about EHRs and to examine attitudes towards different consent models with respect to sharing identifiable and de-identified records for healthcare provision, research and planning.
A cross-sectional questionnaire survey was administered to adult patients and members of the public in primary and secondary care clinics in West London, UK in 2011. In total, 5331 individuals participated in the survey, and 3157 were included in the final analysis.
The majority (91%) of respondents expected to be explicitly asked for consent for their identifiable records to be accessed for health provision, research or planning. Half the respondents (49%) did not expect to be asked for consent before their de-identified records were accessed. Compared with White British respondents, those from all other ethnic groups were more likely to anticipate their permission would be obtained before their de-identified records were used. Of the study population, 59% reported already being aware of EHRs before the survey. Older respondents and individuals with complex patterns of interaction with healthcare services were more likely to report prior awareness of EHRs. Individuals self-identifying as belonging to ethnic groups other than White British, and those with lower educational qualifications were less likely to report being aware of EHRs than White British respondents and respondents with degree-level education, respectively. Those who reported being aware of EHRs were less likely to say they expected explicit consent to be sought before use of their de-identified record.
A large number of patients remain unaware of EHRs, while preference for implicit consent is stronger among those who report previous awareness. Differences in awareness levels and consent expectations between groups with different socio-demographic characteristics suggest that public education and information campaigns should target specific groups to increase public awareness and ensure meaningful informed consent mechanisms.
电子健康记录（EHRs）的发展是英国国民医疗服务体系（NHS）信息战略的重要组成部分，其目的是促进健康信息交换以用于患者护理和二次利用，包括研究和医疗规划。实施电子健康记录系统需要了解患者对同意机制的期望，并考虑公众对信息共享的认知，这可以通过整合初级和二级医疗服务提供者的电子健康记录来实现。
探讨公众对电子健康记录的认知水平，并研究公众对不同同意模式的态度，这些模式涉及为医疗服务、研究和规划共享可识别和去识别化的记录。
2011年，在英国伦敦西部的初级和二级医疗诊所，对成年患者和公众进行了横断面问卷调查。共有5331人参与了调查，最终分析纳入了3157人。
大多数（91%）受访者期望在为健康服务、研究或规划而访问其可识别记录时得到明确的同意请求。一半的受访者（49%）不期望在其去识别化记录被访问之前被征求同意。与英国白人受访者相比，所有其他族裔的受访者更有可能预期在其去识别化记录被使用之前会获得他们的许可。在研究人群中，59%的人报告在调查之前就已经知晓电子健康记录。年龄较大的受访者以及与医疗服务有复杂互动模式的个体更有可能报告之前知晓电子健康记录。自我认定为非英国白人族裔的个体以及教育程度较低的个体，分别比英国白人受访者和拥有学位水平教育的受访者更不可能报告知晓电子健康记录。那些报告知晓电子健康记录的人不太可能表示他们期望在使用其去识别化记录之前被征求明确同意。
大量患者仍然不了解电子健康记录，而在那些报告之前知晓的人中，对默示同意的偏好更强。具有不同社会人口特征的群体在认知水平和同意期望上的差异表明，公众教育和宣传活动应针对特定群体，以提高公众认知并确保有意义的知情同意机制。
