Universal electronic health records (EHRs) appear to be an inevitable technological advance in the computerised communications age. Nationally linked EHR systems remain relatively rare, but are being developed around the world, including Canada [1
], Australia [2
], the United States [3
], and the United Kingdom [4
]. Among the potential benefits of storing and sharing patient information electronically are: improved legibility and better access to medical records, improvement in the quality and safety of medical services, reduction in healthcare costs, improved population-level health and enhanced health research [3
]. However, there are also potential risks which must be mitigated if EHRs are to be publically accepted and universally implemented [3
Some of the ethical and political challenges presented by EHRs include citizens’ rights over ownership of their own medical data, specifically on what terms and in what ways personal or anonymised health records can be used for medical treatment and research. Furthermore, there are concerns about the security of electronic databases and the socio-political implications of such a database for the ‘surveillance society’ ([7
]; see also [10
]). The issues around personal privacy and security are complex and may present barriers to public acceptance of storing and sharing personal health information [3
In the UK a national policy, Connecting for Health
, was developed with the primary purpose of developing a computer database of patient health records ‘from cradle to grave’ for use by clinicians [11
]. Connecting for Health also included a Research Capability Programme that aimed to ensure that researchers had access to patient data, subject to ethical and legal protections. The current UK coalition government now plans to keep the existing infrastructure and try to support and connect local records systems, rather than continuing to develop a standardised national EHR system (for a brief history see [4
]). The future of EHRs in the UK is a subject of much political debate, but the perspective of the principal consumers of health records for medical care – patients and members of the public – is often missing from the discussion.
Few studies have examined patient and public perceptions about electronic health data and universal EHR systems, and these have focused on individuals’ fears and concerns about EHRs, rather than any hopes they might have for improvement in their own health care and public health more broadly. Previous studies in the general population have found that UK adults [12
] and young people [13
] have concerns about using EHRs for medical research. Their concerns were about privacy, security, control over access, and utilization and misuse of data. However, when asked about cancer specifically [14
], people were in favour of using electronic records for public health research and surveillance. Those with long-term conditions and higher levels of literacy about health and healthcare also tend to be more in favour of the use of electronic records (summary care records) than those without such conditions or little knowledge or experience of healthcare issues [15
]. Views about EHRs are therefore likely to differ according to personal circumstances, such as medical status, age, socioeconomic position, and previous healthcare experiences, and according to the proposed usages of EHRs. This study seeks to extend these findings by examining additional patient and public characteristics, including health services use, and by examining a broad range of attitudes towards a universal EHR system.
The aim of this study is to enhance current understanding of patient and public views about the development of universal patient EHRs for healthcare and research. First, we will investigate the level of acceptance for a national EHR system and for using EHRs for healthcare, health services planning and policy and health research. Second, we will examine how these broad views are correlated with: individuals’ personal experiences of healthcare and research; the number and type of long-term conditions respondents have; and individuals’ sociodemographic characteristics. Finally, we will examine individuals’ specific hopes and concerns about EHRs to gain a deeper understanding of patient and public views about EHRs.