Public attitudes to linkage and sharing of health data

Joanne Given, Helen Dolk, Gillian Robinson

Research output: Chapter in Book/Report/Conference proceedingConference contribution

Abstract

IntroductionThere is huge potential for research arising from the effective linking and sharing of administrative data collected by government, and other organisations. However, the use of such data presents challenges in terms of protecting individual privacy. Our objective was to capture a baseline of public attitudes in Northern Ireland towards health data linkage and sharing which can then be reassessed at intervals to measure changes in public trust and understanding. MethodThe Life and Times Survey (NILT) is an annual survey of the attitudes of the public of Northern Ireland to a wide range of social issues. Between October and December 2015 1,202 respondents completed the NILT survey. The 2015 survey included a module of questions and vignettes relating to the theme of ‘Public understanding and views of sharing of health data, data linking, and relevant safeguards’. A systematic random sample of addresses was used to identify respondents. Interviews were then carried out face-to-face in the respondent’s home via Computer Assisted Personal Interviewing. Descriptive statistics and Chi squared tests were used to explore the responses.ResultsGP surgeries (91%) and the NHS (86%) were most trusted to ‘keep information or data that they have about people secure and use it appropriately’. Smaller percentages were prepared to trust government departments (73%) and academic researchers (72%) but trust plummeted when it came to commercial organisations (41%) and charities (51%). The majority of respondents supported sharing of identified health data in order to improve services. Over 95% were in favour of sharing data within the health service by means of the electronic care record, and over two thirds of people were in favour of health information being shared to improve access to benefits or other services.There was a high level of support for all of the data protection measures currently employed for linking data for research. More than two thirds supported the concept of sharing de-identified health data for research, and linking these to data from other sources, where there was public benefit. Respondents were less positive toward data sharing with commercial organisations and 50% believed the data protection safeguards, implemented for academic researchers, should be greater for commercial organisations. However, there was evidence that where there is great public benefit, there is greater support.Nearly one third of respondents felt that data should only be shared for research if there is explicit consent, even if this means that the research is impossible. This strict attitude toward the need for consent was associated with low trust in organisations including the government and NHS. DiscussionThe results of this survey represent the expressed attitudes of people given their current experience and knowledge of these issues. This is a different approach to qualitative research which seeks to hold in depth discussions with people to gauge what their attitudes would be if they fully understood the issues. Both types of research are needed.ConclusionPublic support for data sharing is linked to trust in organisations; data protection measures and the perception of public benefit.
LanguageEnglish
Title of host publicationUnknown Host Publication
Number of pages1
Publication statusAccepted/In press - 27 Jan 2017
EventInformatics for Health - Manchester Central
Duration: 27 Jan 2017 → …

Conference

ConferenceInformatics for Health
Period27/01/17 → …

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health
public benefits
data protection
social issue
health information
descriptive statistics
PC
random sample
surgery
privacy
qualitative research
health service
electronics
interview
evidence
experience

Keywords

  • Public trust
  • Public understanding
  • Survey
  • Health data
  • Administrative data

Cite this

Given, J., Dolk, H., & Robinson, G. (Accepted/In press). Public attitudes to linkage and sharing of health data. In Unknown Host Publication
Given, Joanne ; Dolk, Helen ; Robinson, Gillian. / Public attitudes to linkage and sharing of health data. Unknown Host Publication. 2017.
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title = "Public attitudes to linkage and sharing of health data",
abstract = "IntroductionThere is huge potential for research arising from the effective linking and sharing of administrative data collected by government, and other organisations. However, the use of such data presents challenges in terms of protecting individual privacy. Our objective was to capture a baseline of public attitudes in Northern Ireland towards health data linkage and sharing which can then be reassessed at intervals to measure changes in public trust and understanding. MethodThe Life and Times Survey (NILT) is an annual survey of the attitudes of the public of Northern Ireland to a wide range of social issues. Between October and December 2015 1,202 respondents completed the NILT survey. The 2015 survey included a module of questions and vignettes relating to the theme of ‘Public understanding and views of sharing of health data, data linking, and relevant safeguards’. A systematic random sample of addresses was used to identify respondents. Interviews were then carried out face-to-face in the respondent’s home via Computer Assisted Personal Interviewing. Descriptive statistics and Chi squared tests were used to explore the responses.ResultsGP surgeries (91{\%}) and the NHS (86{\%}) were most trusted to ‘keep information or data that they have about people secure and use it appropriately’. Smaller percentages were prepared to trust government departments (73{\%}) and academic researchers (72{\%}) but trust plummeted when it came to commercial organisations (41{\%}) and charities (51{\%}). The majority of respondents supported sharing of identified health data in order to improve services. Over 95{\%} were in favour of sharing data within the health service by means of the electronic care record, and over two thirds of people were in favour of health information being shared to improve access to benefits or other services.There was a high level of support for all of the data protection measures currently employed for linking data for research. More than two thirds supported the concept of sharing de-identified health data for research, and linking these to data from other sources, where there was public benefit. Respondents were less positive toward data sharing with commercial organisations and 50{\%} believed the data protection safeguards, implemented for academic researchers, should be greater for commercial organisations. However, there was evidence that where there is great public benefit, there is greater support.Nearly one third of respondents felt that data should only be shared for research if there is explicit consent, even if this means that the research is impossible. This strict attitude toward the need for consent was associated with low trust in organisations including the government and NHS. DiscussionThe results of this survey represent the expressed attitudes of people given their current experience and knowledge of these issues. This is a different approach to qualitative research which seeks to hold in depth discussions with people to gauge what their attitudes would be if they fully understood the issues. Both types of research are needed.ConclusionPublic support for data sharing is linked to trust in organisations; data protection measures and the perception of public benefit.",
keywords = "Public trust, Public understanding, Survey, Health data, Administrative data",
author = "Joanne Given and Helen Dolk and Gillian Robinson",
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Given, J, Dolk, H & Robinson, G 2017, Public attitudes to linkage and sharing of health data. in Unknown Host Publication. Informatics for Health, 27/01/17.

Public attitudes to linkage and sharing of health data. / Given, Joanne; Dolk, Helen; Robinson, Gillian.

Unknown Host Publication. 2017.

Research output: Chapter in Book/Report/Conference proceedingConference contribution

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T1 - Public attitudes to linkage and sharing of health data

AU - Given, Joanne

AU - Dolk, Helen

AU - Robinson, Gillian

PY - 2017/1/27

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N2 - IntroductionThere is huge potential for research arising from the effective linking and sharing of administrative data collected by government, and other organisations. However, the use of such data presents challenges in terms of protecting individual privacy. Our objective was to capture a baseline of public attitudes in Northern Ireland towards health data linkage and sharing which can then be reassessed at intervals to measure changes in public trust and understanding. MethodThe Life and Times Survey (NILT) is an annual survey of the attitudes of the public of Northern Ireland to a wide range of social issues. Between October and December 2015 1,202 respondents completed the NILT survey. The 2015 survey included a module of questions and vignettes relating to the theme of ‘Public understanding and views of sharing of health data, data linking, and relevant safeguards’. A systematic random sample of addresses was used to identify respondents. Interviews were then carried out face-to-face in the respondent’s home via Computer Assisted Personal Interviewing. Descriptive statistics and Chi squared tests were used to explore the responses.ResultsGP surgeries (91%) and the NHS (86%) were most trusted to ‘keep information or data that they have about people secure and use it appropriately’. Smaller percentages were prepared to trust government departments (73%) and academic researchers (72%) but trust plummeted when it came to commercial organisations (41%) and charities (51%). The majority of respondents supported sharing of identified health data in order to improve services. Over 95% were in favour of sharing data within the health service by means of the electronic care record, and over two thirds of people were in favour of health information being shared to improve access to benefits or other services.There was a high level of support for all of the data protection measures currently employed for linking data for research. More than two thirds supported the concept of sharing de-identified health data for research, and linking these to data from other sources, where there was public benefit. Respondents were less positive toward data sharing with commercial organisations and 50% believed the data protection safeguards, implemented for academic researchers, should be greater for commercial organisations. However, there was evidence that where there is great public benefit, there is greater support.Nearly one third of respondents felt that data should only be shared for research if there is explicit consent, even if this means that the research is impossible. This strict attitude toward the need for consent was associated with low trust in organisations including the government and NHS. DiscussionThe results of this survey represent the expressed attitudes of people given their current experience and knowledge of these issues. This is a different approach to qualitative research which seeks to hold in depth discussions with people to gauge what their attitudes would be if they fully understood the issues. Both types of research are needed.ConclusionPublic support for data sharing is linked to trust in organisations; data protection measures and the perception of public benefit.

AB - IntroductionThere is huge potential for research arising from the effective linking and sharing of administrative data collected by government, and other organisations. However, the use of such data presents challenges in terms of protecting individual privacy. Our objective was to capture a baseline of public attitudes in Northern Ireland towards health data linkage and sharing which can then be reassessed at intervals to measure changes in public trust and understanding. MethodThe Life and Times Survey (NILT) is an annual survey of the attitudes of the public of Northern Ireland to a wide range of social issues. Between October and December 2015 1,202 respondents completed the NILT survey. The 2015 survey included a module of questions and vignettes relating to the theme of ‘Public understanding and views of sharing of health data, data linking, and relevant safeguards’. A systematic random sample of addresses was used to identify respondents. Interviews were then carried out face-to-face in the respondent’s home via Computer Assisted Personal Interviewing. Descriptive statistics and Chi squared tests were used to explore the responses.ResultsGP surgeries (91%) and the NHS (86%) were most trusted to ‘keep information or data that they have about people secure and use it appropriately’. Smaller percentages were prepared to trust government departments (73%) and academic researchers (72%) but trust plummeted when it came to commercial organisations (41%) and charities (51%). The majority of respondents supported sharing of identified health data in order to improve services. Over 95% were in favour of sharing data within the health service by means of the electronic care record, and over two thirds of people were in favour of health information being shared to improve access to benefits or other services.There was a high level of support for all of the data protection measures currently employed for linking data for research. More than two thirds supported the concept of sharing de-identified health data for research, and linking these to data from other sources, where there was public benefit. Respondents were less positive toward data sharing with commercial organisations and 50% believed the data protection safeguards, implemented for academic researchers, should be greater for commercial organisations. However, there was evidence that where there is great public benefit, there is greater support.Nearly one third of respondents felt that data should only be shared for research if there is explicit consent, even if this means that the research is impossible. This strict attitude toward the need for consent was associated with low trust in organisations including the government and NHS. DiscussionThe results of this survey represent the expressed attitudes of people given their current experience and knowledge of these issues. This is a different approach to qualitative research which seeks to hold in depth discussions with people to gauge what their attitudes would be if they fully understood the issues. Both types of research are needed.ConclusionPublic support for data sharing is linked to trust in organisations; data protection measures and the perception of public benefit.

KW - Public trust

KW - Public understanding

KW - Survey

KW - Health data

KW - Administrative data

M3 - Conference contribution

BT - Unknown Host Publication

ER -

Given J, Dolk H, Robinson G. Public attitudes to linkage and sharing of health data. In Unknown Host Publication. 2017