Most patients in the UK (79 percent) would worry about the security of their health record if this was part of a national electronic health record (EHR) system, according to a new study published in the journal BMC Medical Informatics and Decision Making. The finding highlights the need for intensive public education and engagement initiatives to communicate clearly about the aims of integrated EHRs.
Chrysanthi Papoutsi, PhD, NIHR CLAHRC Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, and colleagues conducted a survey to gauge patient views about the security and privacy of integrated EHRs used for health provision, research and policy in the UK. Survey participants (N = 5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 percent) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in four mixed focus groups with patients, health professionals and researchers (total N = 120).
In the survey, 79 percent of respondents reported that they would worry about the security of their record if this was part of a national EHR system. Similarly, 71 percent voiced doubts about the ability of the National Health Service (NHS) to guarantee the security of EHRs at the time the survey was carried out. Of those who reported being worried about EHR security, many would nevertheless support their development (55 percent), while 12 percent would not support national EHRs and a sizeable proportion (33 percent) were undecided. There were also variations by age, ethnicity and education.
"Our survey results emphasise the importance of recognising differences between socio-demographic groups in the UK to better understand and respond to patient views and expectations," the authors write. "In this study people who self-identified as belonging to an ethnic group other than White British were more likely to suggest that EHRs would offer better security than existing record keeping systems." These findings deserve further exploration to understand differences in patient views and preferences in more detail and adapt policies accordingly, the authors note.
In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision.
"Our survey and focus group findings show that patients and the public would worry about the security of EHRs and had similar concerns regarding the ability of the health service to safeguard information. Their views were often accompanied by uncertainty around what EHRs might look like and what wider information sharing with researchers and policy-makers might mean in practice," Dr. Papoutsi’s team points outs. "Strengthening information-sharing protocols and protection mechanisms to account for the contextual and situated character of privacy preferences and risk-benefit calculations, while allowing for informed patient participation and choice, may help increase confidence in the ability of the health service to manage and share patient information safely."
Source: BioMed Central
Image credit: Pixabay.com
Chrysanthi Papoutsi, PhD, NIHR CLAHRC Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, and colleagues conducted a survey to gauge patient views about the security and privacy of integrated EHRs used for health provision, research and policy in the UK. Survey participants (N = 5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 percent) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in four mixed focus groups with patients, health professionals and researchers (total N = 120).
In the survey, 79 percent of respondents reported that they would worry about the security of their record if this was part of a national EHR system. Similarly, 71 percent voiced doubts about the ability of the National Health Service (NHS) to guarantee the security of EHRs at the time the survey was carried out. Of those who reported being worried about EHR security, many would nevertheless support their development (55 percent), while 12 percent would not support national EHRs and a sizeable proportion (33 percent) were undecided. There were also variations by age, ethnicity and education.
"Our survey results emphasise the importance of recognising differences between socio-demographic groups in the UK to better understand and respond to patient views and expectations," the authors write. "In this study people who self-identified as belonging to an ethnic group other than White British were more likely to suggest that EHRs would offer better security than existing record keeping systems." These findings deserve further exploration to understand differences in patient views and preferences in more detail and adapt policies accordingly, the authors note.
In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision.
"Our survey and focus group findings show that patients and the public would worry about the security of EHRs and had similar concerns regarding the ability of the health service to safeguard information. Their views were often accompanied by uncertainty around what EHRs might look like and what wider information sharing with researchers and policy-makers might mean in practice," Dr. Papoutsi’s team points outs. "Strengthening information-sharing protocols and protection mechanisms to account for the contextual and situated character of privacy preferences and risk-benefit calculations, while allowing for informed patient participation and choice, may help increase confidence in the ability of the health service to manage and share patient information safely."
Source: BioMed Central
Image credit: Pixabay.com
References:
Papoutsi C et al. (2015) Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study. BMC Medical Informatics and Decision Making, 14
October 2015. doi: 10.1186/s12911-015-0202-2
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healthmanagement, electronic health records, health data, data sharing, data security, NHS, EHR
Most patients in the UK (79 percent) would worry about the security of their health record if this was part of a national electronic health record (EHR) system, according to a new study in the journal BMC Medical Informatics and Decision Making.
