Table 4.
Key themes and sub-themes
| 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 |