Abstract
Introduction
Although recent studies have shown that patients support confidential access to their anonymised electronic patient record (EPR) for research, concerns have arisen surrounding security, privacy, potential misuse of data, willingness to share data with certain groups and clear processes for opt-out. Additionally, the lack of transparency and engagement regarding the re-use of healthcare data is thought to have undermined public trust as illustrated by response to plans for sharing primary care records in the UK. One proposed solution is to use technology to facilitate dynamic consent whereby patients can tailor preferences for who they share their data with, whilst also providing feedback about data recipients and research results. The purpose of this study was to undertake qualitative research to a) explore patient attitudes to the use of anonymised health data for research purposes, and b) to evaluate patient perceptions of a dynamic consent model.
Methods
40 participants with a rheumatic condition were recruited to take part in one of three focus groups and/or a semi-structured interview (n=26). Data were analysed thematically using key techniques from grounded theory.
Results
Three broad themes characterised participants’ views on the use of EPRs for medical research and their perceptions of dynamic consent: 1) ‘The role of trust and perceived social responsibility to share health data’; 2) ‘Transparency through dynamic consent and patient feedback, and the potential for enhanced empowerment and patient engagement’3) ‘Operational and technological scope and challenges for participation’. Participants had a high level of trust in the NHS system but this was threatened by concerns about certain non-NHS recipients and potential misuse of data. There were uncertainties about the degree to which they would want to express consent preferences, but they particularly valued potential for research feedback which is usually absent. Most participants found the system easy to use but a small number would not want to engage.
Discussion/Conclusion
This study has demonstrated a favourable view of a technical solution to help maintain trust in the re-use of health data and to meet the needs of recent national recommendations to bring greater transparency and patient engagement associated with this. The work has provided important insights for consideration when refining design of the intervention to enable implementation and piloting in practice.
Although recent studies have shown that patients support confidential access to their anonymised electronic patient record (EPR) for research, concerns have arisen surrounding security, privacy, potential misuse of data, willingness to share data with certain groups and clear processes for opt-out. Additionally, the lack of transparency and engagement regarding the re-use of healthcare data is thought to have undermined public trust as illustrated by response to plans for sharing primary care records in the UK. One proposed solution is to use technology to facilitate dynamic consent whereby patients can tailor preferences for who they share their data with, whilst also providing feedback about data recipients and research results. The purpose of this study was to undertake qualitative research to a) explore patient attitudes to the use of anonymised health data for research purposes, and b) to evaluate patient perceptions of a dynamic consent model.
Methods
40 participants with a rheumatic condition were recruited to take part in one of three focus groups and/or a semi-structured interview (n=26). Data were analysed thematically using key techniques from grounded theory.
Results
Three broad themes characterised participants’ views on the use of EPRs for medical research and their perceptions of dynamic consent: 1) ‘The role of trust and perceived social responsibility to share health data’; 2) ‘Transparency through dynamic consent and patient feedback, and the potential for enhanced empowerment and patient engagement’3) ‘Operational and technological scope and challenges for participation’. Participants had a high level of trust in the NHS system but this was threatened by concerns about certain non-NHS recipients and potential misuse of data. There were uncertainties about the degree to which they would want to express consent preferences, but they particularly valued potential for research feedback which is usually absent. Most participants found the system easy to use but a small number would not want to engage.
Discussion/Conclusion
This study has demonstrated a favourable view of a technical solution to help maintain trust in the re-use of health data and to meet the needs of recent national recommendations to bring greater transparency and patient engagement associated with this. The work has provided important insights for consideration when refining design of the intervention to enable implementation and piloting in practice.
| Original language | English |
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| Publication status | Published - 27 Aug 2015 |
| Event | http://www.farrinstitute.org/events-courses/event/the-farr-institute-international-conference-2015 - Duration: 26 Aug 2015 → 28 Aug 2015 |
Conference
| Conference | http://www.farrinstitute.org/events-courses/event/the-farr-institute-international-conference-2015 |
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| Period | 26/08/15 → 28/08/15 |