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Table 4 Key themes and sub-themes

From: Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

Key themes Sub themes Studies
Widespread Conditional Support General widespread, yet conditional, support for uses of data in health research. 3, 7, 8, 10, 19, 21, 22, 25
Health research or more general research is typically “in the public interest” or will benefit “the greater good”. 2, 3, 4, 7, 8, 9, 10, 12, 13, 14, 15, 18, 19, 20, 21, 22, 25
“Doesn’t this happen already?!” 7, 10, 11
Research uses of data were considered to be in the public interest and should therefore be used, not wasted. 1, 2, 6, 19, 21, 22
Conditions for Support Assurances of individuals’ confidentiality are crucial for public support. 2, 3, 4, 5, 6, 9, 11, 14, 17, 18, 21, 22, 24
Public preferences for data to be anonymous. 1, 3, 5, 6, 9, 11, 14,15, 17, 20, 21, 22
If the data is anonymous “What does it matter?!” 6
Anonymisation is not a panacea. 8, 17
Anonymisation is imperfect. 1, 5, 8, 11, 14
Participants made a distinction between “plain stats” and more detailed qualitative information. 1, 3, 11, 14
Assurances of safeguards in place to protect against misuse or abuse of data were considered important for ensuring public support and/or acceptability. 1, 7, 8, 10, 11, 14, 18, 19, 21, 22, 24
Public preferences for strong accountability mechanisms to be in place. 4, 5, 12, 14, 18, 22
Low awareness of current research practices. 8, 10, 11, 14, 15, 17, 19, 20, 21, 25
Low public awareness of current governance or ethics processes. 7, 10, 19, 21
Assurances of data security are important for public acceptability of research uses of data. 7, 8, 10, 11, 24
Concerns about data security were widely identified. 1, 5, 6, 8, 11, 14, 20, 22, 24
Concerns about data security related to the fallibility of IT systems to protect against breaches. 5, 8, 11
Concerns about data security related to human error were widely called upon. 5, 6, 8, 11, 23
Breaches of security were regarded as always being possible, yet security risks were sometimes said to be tolerated or accepted where individuals valued the purpose and potential benefits of research. 8, 10, 22
Public support was conditional if data would only be used for legitimate purposes. 8, 11, 19, 21, 22, 25
Benefits Key condition for public support for research using individuals’ data was that such research must have public benefits. 1, 2, 4, 5, 6, 10, 11, 18, 21, 23, 25
Perceived personal benefits, or personal relevance of research was reported to motivate participation in research. 7, 11, 13, 19, 23
Concerns relating to personal privacy were balanced with recognition of the importance of societal benefits anticipated to come from research. 4, 5, 8, 9,14, 15, 17, 21, 22, 24
Societal benefits prioritised over personal privacy. 21, 22
Assurances that research would - or at least have the potential to - bring about public benefits were fundamental for ensuring public support or acceptance. 1, 2, 4, 5, 6, 10, 11, 18, 21, 23, 25
Control and Consent Perceived autonomy, or individual control over how data is used, was found to be a key factor shaping public responses. 4, 12, 14, 18, 23, 25
Members of the public value having control over their own data. 2, 12, 14, 18, 23, 25
Participants explicitly referred to control over their own data in terms of individual or human rights. 4, 14, 15, 17, 25
There was an evident link between levels of trust (in research organisations or data controllers) and desired level of individual control. 4, 25
Individual control needs to be balanced with efficiency of research. 5, 10, 12, 18, 25
Consent as a mechanism for facilitating individual control. 12, 15, 23, 25
Varied views on consent and what form this should take. 2, 11, 12, 14, 20, 22, 23, 24
Public preferences for explicit opt-in consent models. 14, 15, 19, 23
Public acceptance of opt-out models in recognition of the challenges or practical limitations of opt-in. 10, 19
Public preference for varied or flexible consent models which would enable individuals to set limits on their consent, or to indicate particular preferences or objections. 4, 5, 12, 18, 22, 23, 24
Public objections to one-time consent models which would not allow individuals to review or change their consent preferences. 16, 23, 24
Public opinions or preferences are not fixed but change and adapt in response to information, deliberation, events or circumstances. 11, 15, 16, 20, 21, 23, 25
Consent was recognised to be problematic. 8, 10, 12, 17, 21, 22, 23
Acknowledgment of the potential for selection bias or low participation rates if explicit opt-in consent is required. 10
Consent regarded as important in relation to named or identifying data. 5, 20, 21
Consent regarded as important in relation to qualitative information rather than “plain stats”. 3
Consent regarded as important in relation to research using genetic data. 18, 19, 24
Consent regarded as important in relation to where a commercial entity is involved in research. 18
Consent was widely viewed to be important and in this regard, represented as an act of courtesy. 8, 17, 20, 23, 25
Uses and Abuses of Data A key concern regarding research uses of data was the potential for data to be misused or abused. 4, 5, 8, 10, 11, 12, 13, 14, 21, 22
Concerns about data being sold or passed on to third parties. 4, 8, 9, 11, 12, 14, 19, 21, 22, 23, 25
Concern about data being used for political purposes. 5, 11, 21, 24
Concerns about potential future uses of data. 5, 9, 11, 12, 13, 19, 21, 22, 23
Concerns about potential “slippery slopes” as more information becomes accessible. 14
Concerns about data being used for purposes other than those which were originally described. 17, 21, 23
Concerns about the proliferation of data within modern societies and increasing surveillance through data collection - “Big Brother Society”. 5, 11, 13, 14, 22
Concern related to the potential for stigma or discriminatory treatment to result from research which would label or categorise groups within society. 1, 5, 6, 8, 11,14,19
Concerns relating to potential indirect negative impacts on individuals from participating in research (e.g. increased or denied insurance premiums due to information being accessed from medical records, etc.). 1, 5, 6, 9, 11,12, 17, 24
Participants made differentiations between types of data and regarded some as more sensitive - and concerning - than others (e.g. mental health, sexual health, sexuality and religion). 6, 7, 11, 15, 16, 17, 20, 22, 23
Private Sector Involvement Concern about private sector involvement in research using individuals’ data. 5, 6, 7, 8, 9, 10, 11, 12, 14, 17, 20, 22, 24
Low levels of public trust in the private sector. 4, 5, 10, 11, 12, 14, 18, 21, 22, 23, 25
Perceptions that private sector organisations are motivated by profit. 6, 10, 11, 20, 22
Distinctions were made between research perceived to be “for profit” and research perceived to be “for the greater good”. 6, 7, 10, 11, 21, 22, 25
Distinctions were made between “research purposes” and “commercial gain”. 3, 22
Participants wanted assurances that public benefits would be prioritised over profit. 6, 10, 14, 18, 21, 25
Participants wanted assurances that individuals’ privacy would be prioritised over profit. 18
Participants wanted assurances that profits would be shared or reinvested so as to create public/societal benefits. 6
Participants felt it was appropriate that private sector organisations pay for access to public sector data. 6, 11, 22
Acceptance of private sector organisations paying for access to public sector data if the revenue generated is appropriately re-invested in the public sector. 17, 25
Widespread concern about private sector involvement in research balanced by recognition that private sector involvement in research can be important or valuable. 8, 11, 21, 22
Private sector involvement represented as a “necessary evil”. 6, 7, 8
The private sector was not regarded as a homogenous entity, but rather distinctions were made between private sector organisations. 6, 8
Private sector involvement was acceptable as long as commercial actors did not have access to data. 15
Concerns about private sector organisations as funders of research and the implications this may have for the integrity or objectivity of the research. 5, 10, 15, 21, 25
Ambivalent views on government research. 6, 11, 15
Concern government access to data. 9, 11, 12, 22, 24
High levels of trust in universities and academic researchers. 7, 11, 12, 20, 22
Lack of trust in universities and academic researchers. 4
Trust and Transparency Levels of trust individuals place in research organisations, oversight bodies or government informs their level of support for research uses of data. 2, 4, 6, 11, 14, 22
Trust is essential for ensuring public acceptance and/or participation in research. 2, 4, 6, 8, 9, 11, 13, 14, 21
Higher levels of trust in the public sector compared to the private sector, largely related to greater confidence in accountability and data protection mechanisms within the public sector. 6, 11, 21
High levels of public trust in primary healthcare providers. 5, 7, 8, 14, 15, 17, 25
Higher levels of trust in known or familiar individuals or organisations. 4, 17, 20, 22, 24, 25
Preference that data-sharing and research uses of data to be overseen within, and governed by the public sector. 5, 6, 11
Preference that such processes are overseen and controlled by healthcare professionals (e.g. known/familiar individuals). 5, 14, 15
To oversee and govern data-sharing and research uses of data may be overly burdensome to healthcare professionals and take valuable time and resources away from the provision of healthcare. 17
Participants request for more information about current research practices and uses of data. 2, 4, 5, 6, 7, 9, 10, 11, 12, 13, 14, 15, 19, 21, 23, 24
Transparency as to how data is used for research purposes is considered crucial for building public trust, and consequentially securing public support. 12, 14, 18, 21
The importance of awareness raising to build trust and public support is emphasised in certain studies. 6, 7, 11, 14, 15, 18, 19
There is public interest and enthusiasm for more meaningful forms of public engagement/involvement. 5, 6, 11
Public engagement/involvement is essential for ensuring accountability. 5, 6, 15