Health information relates to information on a person’s health; care that is being, has been or may be provided; and any other information required for the provision of care. Health information is invaluable both for managing direct patient care and also for reasons beyond direct care, such as health services management and planning, quality improvement, and research (1). Advances in digital technologies have improved the availability and utility of health information (2, 3). Ireland’s current healthcare structures, however, rely on many paper-based systems making the use and sharing of health information difficult. Under the Sláintecare Implementation Strategy and Action Plan 2021-2023 (4), there are plans to introduce eHealth initiatives such as ePrescribing, summary care records, shared care records and electronic health records.
A challenge in moving towards a more digital healthcare system is achieving an appropriate balance between the protection of personal health information and the use of this information to improve both direct care and the wider provision of care. Evidence from other countries emphasises the importance of public engagement to understand what is acceptable to people in relation to their health information and ensure practices, processes, and policies are person-centred (5, 6). As Ireland is at an early stage of eHealth adoption, it is an optimal time to engage with the public on this topic and inform the future development and implementation of health information initiatives.
The Health Information and Quality Authority (HIQA), in partnership with the Department of Health and the Health Service Executive (HSE), recently conducted the first national public engagement on health information in Ireland. A national telephone survey was conducted with 1,228 members of the public. A further 85 people took part in 14 focus groups. Representatives of the public, patients, addiction service users, disability service users, homeless service users, mental health service users, migrant and asylum seeker communities, sexual health service users, members of the Traveller community, and young people aged 16 to 18 years old took part in the focus groups. The national public engagement explored three key areas relating to health information: the use of health information for direct patient care; the use of health information beyond direct care; and people’s views in relation to digital health records.
Overall, people think it is important that their health information is used for their direct care and purposes beyond their direct care. In the survey, 97% of people said that it is important that a hospital doctor treating an individual should have access to accurate information about their medical history and medications. 94% of people said it is important that health information is used to improve the quality of care. However, people want to be informed about who their health information will be shared with and for what purpose. 71% of survey respondents want to know more about what information is shared between healthcare professionals who are treating them and 77% want to be more informed about how their information will be used for purposes beyond their direct care.
Our findings show that people believe that their health information belongs to them and that they should be able to access it. In the survey, 86% of people said that it’s important for them to be able to access their health records online. In the focus groups, people told us that such access would empower them to play a more active role in their own care. They also said that health information must be accessible to everyone, and different formats for people with specific needs are important.
People welcome the move towards a more digital healthcare system; they see the value of sharing information electronically and for healthcare professionals to have quicker access to their information. However, 88% of survey respondents said that they want to be informed about how their information would be kept safe and secure. In the focus groups, people were mostly concerned about the security of sensitive information, such as information related to mental or sexual health, and wanted additional safeguards to be in place for this information.
The findings from the public engagement, alongside an evidence synthesis and feedback from stakeholders, will be used by HIQA to develop recommendations on a consent model for the collection, use and sharing of health information in Ireland. A consent model is required to clearly outline the situations when consent is, and is not, required for the use of personal information in health and social care. A draft set of recommendations has been published for public consultation on www.hiqa.ie. The public consultation gives people the opportunity to provide feedback on the draft recommendations and become involved in the development process by submitting their views. After the public consultation, the recommendations will be reviewed and amended to reflect the findings. They will then be submitted to the Minister for Health and will also be published on the HIQA website.
A report of the complete findings from the National Public Engagement on Health Information is available on www.hiqa.ie. You can also access a technical report which outlines the methods used; a response document outlining how the Department of Health, the HSE and HIQA are going to use the findings; and an anonymised survey data file.
Please watch the video for an overview of the key findings:
- Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC, Detmer, DE. Toward a National Framework for the Secondary Use of Health Data: An American Medical Informatics Association White Paper. Journal of the American Medical Informatics Association. 2007;14(1):1-9.
- Iott BE, Campos-Castillo C, Anthony DL. Trust and Privacy: How Patient Trust in Providers is Related to Privacy Behaviors and Attitudes. AMIA Annual Symposium Proceedings. 2020;2019:487-93.
- Sittig DF, Wright A, Coiera E, Magrabi F, Ratwani R, Bates DW, Singh, H. Current challenges in health information technology–related patient safety. Health Informatics Journal. 2020;26(1):181-9.
- Government of Ireland. Sláintecare Implementation Strategy and Action Plan 2021-2023. 2021. Available from: https://assets.gov.ie/134746/9b3b6ae9-2d64-4f87-8748-cda27d3193f3.pdf
- The National Data Guardian. The National Data Guardian for Health and Social Care Annual report 2020-2021. London: 2021. Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/
- Health Information and Quality Authority (HIQA). International review of consent models for the collection, use and sharing of health information. Available from: https://www.hiqa.ie/sites/default/files/2020-02/International-Review–consent-models-for-health-information.pdf.
|Dr Sarah Jane Flaherty is a research officer with the Health Information Quality team at the Health Information and Quality Authority (HIQA). She is a graduate of Nutritional Sciences, University College Cork and holds an MSc in Sport and Exercise Nutrition from Loughborough University and a Master’s in Public Health from the University of Nottingham. In 2014, Sarah Jane joined the SPHeRE programme as a PhD scholar under the supervision of Prof Mary McCarthy. Funded by the HRB Centre for Diet and Health Research, she was awarded a PhD from University College Cork in 2019. Sarah Jane’s thesis was titled Disrupting routines, facilitating control: exploring a change towards healthier food purchasing behaviour using a health app.|