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

Classified as probably not a substantial claim. May combine two claims.

Key themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research.

“Key themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Twenty-five studies were included in the review.

“Twenty-five studies were included in the review.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries.

“The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries.”

Probably not a substantial claim: may not pass S3 (load-bearing).

The qualitative methods represented in the included studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews.

“The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

The included studies were conducted between 1999 and 2013, with eight studies not reporting data collection dates.

“The included studies were conducted between 1999 and 2013 (eight studies selected for inclusion did not report data collection dates).”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

Research uses of data were considered to be in the public interest and should therefore be used, not wasted.

“Research uses of data were considered to be in the public interest and should therefore be used, not wasted.”

May combine two claims.

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.

“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.”

Classified as probably not a substantial claim.

Individual control needs to be balanced with efficiency of research.

“Individual control needs to be balanced with efficiency of research.”

May combine two claims.

Consent was widely viewed to be important and was represented as an act of courtesy.

“Consent was widely viewed to be important and in this regard, represented as an act of courtesy.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Private sector involvement was represented as a 'necessary evil'.

“Private sector involvement represented as a “necessary evil”.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Distinctions were made between 'research purposes' and 'commercial gain'.

“Distinctions were made between “research purposes” and “commercial gain”.”

Probably not a substantial claim: may not pass S3 (load-bearing).

The initial database searches revealed 1502 papers.

“The initial database searches revealed 1502 papers.”

Probably not a substantial claim: may not pass S3 (load-bearing).

An additional 19 papers were identified through other sources.

“An additional 19 papers were identified through other sources (hand-searching references, expert communications and grey-literature searches).”

May combine two claims.

There were concerns about the proliferation of data within modern societies and increasing surveillance through data collection-'Big Brother Society'.

“Concerns about the proliferation of data within modern societies and increasing surveillance through data collection - “Big Brother Society”.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Participants in several studies were surprised that data are not already more widely used, asking 'Doesn't this happen already?!'.

““Doesn’t this happen already?!””

May combine two claims.

There were 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.

“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.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Health research or more general research is typically considered to be in the public interest or to benefit the greater good.

“Health research or more general research is typically “in the public interest” or will benefit “the greater good”.”

May combine two claims.

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).

“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).”

May combine two claims.

Widespread concern about private sector involvement in research was balanced by recognition that private sector involvement in research can be important or valuable.

“Widespread concern about private sector involvement in research balanced by recognition that private sector involvement in research can be important or valuable.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Private sector involvement was acceptable as long as commercial actors did not have access to data.

“Private sector involvement was acceptable as long as commercial actors did not have access to data.”

Probably not a substantial claim: may not pass S3 (load-bearing).

There was a lack of trust in universities and academic researchers.

“Lack of trust in universities and academic researchers.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).

Public engagement/involvement is essential for ensuring accountability.

“Public engagement/involvement is essential for ensuring accountability.”

Classified as probably not a substantial claim.

The public should not be conceived of as simply subjects of information provision relating to research uses of data.

“However, the included studies highlight that the public should not be conceived of as simply subjects of information provision relating to research uses of data.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Discussions of unequal relationships in other studies were not explicitly reported.

“However, discussions of unequal relationships in other studies were not explicitly reported though some study participants may have implicitly referred to them.”

Probably not a substantial claim: may not pass S3 (load-bearing).

African Americans expressed lower willingness to engage in genetic/genomic research due to past abuses.

“African Americans expressing lower willingness to engage in genetic/genomic research due to past abuses91;”

May combine two claims.

Older participants were reported to favour less individual control or to be less worried about the possible loss of confidentiality.

“In contrast, older participants were reported to favour less individual control95 or to be less worried about the possible loss of confidentiality.96”

May combine two claims.

Transparency about how data is used in research is considered crucial for building public trust, and thereby securing public support.

“Transparency about how data is used in research is considered crucial for building public trust, and thereby securing public support.85”

May combine two claims.

Transparency as to how data is used for research purposes is considered crucial for building public trust, and consequentially securing public support.

“Transparency as to how data is used for research purposes is considered crucial for building public trust, and consequentially securing public support.”

May combine two claims.

Key conditions for public support or acceptance relate to the research being in "the public interest" or for "the greater good" and to public trust in researchers or organisations handling/accessing their data.

“Key conditions for public support or acceptance relate to the research being in “the public interest” or for “the greater good” and to public trust in researchers or organisations handling/accessing their data.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

A total of 1521 studies were identified from the systematic searches, and 25 studies were included in the review.

“A total of 1521 studies were identified from the systematic searches. From these, 25 studies were included in the review.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).

Overall opinions were largely consistent with the key themes of this review.

“However, overall opinions were largely consistent with the key themes of this review.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Despite variations in opinion, the overall views of these study populations were consistent with the general findings of the thematic synthesis.

“Despite variations in opinion, the overall views of these study populations were consistent with the general findings of the thematic synthesis.”

Probably not a substantial claim: may not pass S3 (load-bearing).

In a Japanese study, participants were reported to describe unequal relationships between patients and doctors with patients belonging to a lower rank.

“For example, in a Japanese study89 participants were reported to describe “unequal relationships” between patients and doctors with patients belonging to a “lower rank”.”

May combine two claims.

The themes of public benefits and public trust run through all the studies (explicitly or implicitly) and underpin all other areas of concern or interest.

“The themes of public benefits and public trust run through all the studies (explicitly or implicitly) and underpin all other areas of concern or interest.”

Probably not a substantial claim: may not pass S3 (load-bearing).

In one study, participants perceived genetic data to be potentially less sensitive than information from medical records (e.g. information relating to reproductive or mental health).

“In one study, participants perceived genetic data to be potentially less sensitive than information from medical records (e.g. information relating to reproductive or mental health).101”

Probably not a substantial claim: may not pass S3 (load-bearing).

The importance of awareness raising to build trust and public support is emphasised in certain studies.

“The importance of awareness raising to build trust and public support is emphasised in certain studies.”

May combine two claims.

Seven key themes were identified across the included studies: Widespread Conditional Support; Conditions for Support; Benefits; Control and Consent; Uses and Abuses of Data; Private Sector Involvement; and Trust and Transparency.

“Seven key themes were identified across the included studies: Widespread Conditional Support; Conditions for Support; Benefits; Control and Consent; Uses and Abuses of Data; Private Sector Involvement; and Trust and Transparency.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

Another study noted that some felt anxious about their data being held while others believed they had little control over their own information.

“Another noted that some felt “anxious” about their data being held while others believed they had little control over their own information.94”

Probably not a substantial claim: may not pass S3 (load-bearing).

LGBT participants in the U.K. were concerned for the misuse of data, particularly identifiable data, that could lead to discriminating opinions and behaviour.

“and LGBT participants in the U.K. concerned for the misuse of data, particularly identifiable data, that could lead to discriminating opinions and behaviour.92”

Probably not a substantial claim: may not pass S3 (load-bearing).

Some studies suggest genetic data is particularly sensitive or personal/potentially identifying.

“Some studies suggest genetic data is particularly sensitive99 or personal/potentially identifying.100”

Probably not a substantial claim: may not pass S3 (load-bearing).

Such involvement was considered essential for ensuring accountability.

“Such involvement was considered essential for ensuring accountability.88”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

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.

“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.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

U.S. veterans reported higher levels of trust and greater support for research by Veteran Affairs.

“These smaller populations include U.S. veterans reporting higher levels of trust and greater support for research by Veteran Affairs90;”

Probably not a substantial claim: may not pass S3 (load-bearing).

Participants from another study reported no real variation in attitudes toward the use of medical records and biological samples.

“Participants’ from another study reported no real variation in attitudes toward the use of medical records and biological samples.102”

Probably not a substantial claim: may not pass S3 (load-bearing).

The researchers were wary of these results due to the unrepresentativeness of the sample.

“However, the researchers were wary of these results due to the unrepresentativeness of the sample.”

• cites [25] Buckley BS, Murphy AW, MacFarlane AE. Public attitudes to the use in research of personal health information from general practitioners’ records a survey of the Irish general public. J Med Ethics. 2011;37:50–5. sourceNot checked yet

  Not checked in the free run.

May combine two claims.

Included studies indicate generally higher levels of trust in the public sector compared with the private sector, largely related to greater confidence in accountability and data protection mechanisms within the public sector.

“However the included studies indicate generally higher levels of trust in the public sector compared with the private sector, largely related to greater confidence in accountability and data protection mechanisms within the public sector.78”

May combine two claims.

These wider concerns relate to the potential for individuals or groups within society to be labelled as a result of data-linkage research and for such labelling to result in stigma or discriminatory treatment.

“the potential for individuals or groups within society to be labelled as a result of data-linkage research and for such labelling to result in stigma or discriminatory treatment, and to;”

May combine two claims.

Whilst studies have reported public attitudes towards anonymisation it is not always clear what members of the public understand anonymisation to mean, or what they perceive it to require.

“Therefore whilst studies have reported public attitudes towards anonymisation it is not always clear what members of the public understand anonymisation to mean, or what they perceive it to require.”

May combine two claims.

The studies indicate that whilst autonomy-or individual control over one's data-is highly valued, consent is acknowledged to be problematic.

“Rather, the studies indicate that whilst autonomy—or individual control over one’s data—is highly valued, consent is acknowledged to be problematic.”

Probably not a substantial claim: may not pass S3 (load-bearing).

These wider concerns relate to the potential for research based on analysis of large data-sets to be used to inform policies or practices designed "for the masses" rather than reflecting individual circumstances and needs.

“the potential for research based on analysis of large data-sets to be used to inform policies or practices designed “for the masses” rather than reflecting individual circumstances and needs.”

Probably not a substantial claim: may not pass S2 (checkable).

Overall this thematic synthesis has revealed that there is great scope for qualitative methods to be used more fully or effectively in this area.

“Overall this thematic synthesis has also revealed that there is great scope for qualitative methods to be used more fully or effectively in this area.”

May combine two claims.

The studies identified in this review reveal generally lower levels of trust in private sector actors compared with public sector actors alongside concern about private sector involvement in research.

“The studies identified in this review reveal generally lower levels of trust in private sector actors compared with public sector actors alongside concern about private sector involvement in research.”

May combine two claims.

The sample sizes of included studies ranged from 14 to 217 participants with the average being 54.84.

“The sample sizes ranged from 14 to 217 participants with the average being 54.84.”

May combine two claims.

These concerns are often related to profit creation from use of individuals' data and/or perceptions that data is routinely sold or passed on within the private sector.

“These concerns are often related to profit creation from use of individuals’ data and/or perceptions that data is routinely sold or passed on within the private sector.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Within the included studies members of the public have been conceptualised in a number of ways.

“Within the included studies members of the public have been conceptualised in a number of ways.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Some studies have suggested that uses of data in research-and particularly data-linkage-is a complex area which is difficult for members of the public to understand or meaningfully engage with.

“Some studies have suggested that uses of data in research—and particularly data-linkage—is a complex area which is difficult for members of the public to understand or meaningfully engage with.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Researchers in one study specifically stated that ethical approval was not required.

“while researchers in one study specifically stated that ethical approval was not required.108”

May combine two claims.

This review has found that to date the literature has not engaged with the subject of authorisation and there is a lack of evidence on public awareness of, or responses to, authorisation as a governance mechanism.

“However, this review has found that to date the literature has not engaged with the subject of authorisation and there is a lack of evidence on public awareness of, or responses to, authorisation as a governance mechanism.”

May combine two claims.

While random or quota sampling was often used, the qualitative methods relied upon people volunteering to participate in the research which often involved a significant time commitment.

“Additionally, it is important to note that while random or quota sampling was often used112 the qualitative methods relied upon people volunteering to participate in the research which often involved a significant time commitment.”

May combine two claims.

It has found that whilst a variety of concerns are raised (e.g. relating to confidentiality, individuals' control over their data, uses and abuses of data and potential harms arising) where members of the public perceive there to be actual or potential public benefits arising from research and where they have trust in the individuals or organisations conducting and/or overseeing data linkage/sh

“It has found that whilst a variety of concerns are raised (e.g. relating to confidentiality, individuals’ control over their data, uses and abuses of data and potential harms arising) where members of the public perceive there to be actual or potential public benefits arising from research and where they have trust in the individuals or organisations conducting and/or overseeing data linkage/sh”

May combine two claims.

Those studies which involved deliberative methods have demonstrated that members of the public were able and enthusiastic to engage in discussions on this subject and were competent and valuable deliberators.

“However, those studies which involved deliberative methods have demonstrated that members of the public were able and enthusiastic to engage in discussions on this subject and were competent and valuable deliberators.105”

Probably not a substantial claim: may not pass S2 (checkable).

Qualitative studies can provide rich insights and a deeper understanding of the complexities or nuances of public opinions and experiences.

“they can provide rich insights and a deeper understanding of the complexities or nuances of public opinions and experiences.”

May combine two claims.

Previously the literature in this area was dominated by practitioner perspectives and public views were underrepresented or underreported.

“Previously it was noted that the literature in this area was dominated by practitioner perspectives and public views were underrepresented or underreported [5].”

• cites [5] Robling MR, Hood K, Houston H, Pill R, Fay J, Evans HM. Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. J Med Ethics. 2004;30(1):104–9. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

A systematic literature search was conducted of five electronic databases on 4 April 2014.

“A systematic literature search was conducted of five electronic databases (CINAHL Plus, EMBASE, Medline, Scopus and Web of Science) on 4 April 2014.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Increasing amounts of health research are conducted through data-linkage.

“Increasing amounts of health research are conducted through data-linkage, for example health related records have been linked with population registries [12], alcohol and drugs services [11], genealogical registries [11], the census [13, 14]), the education system [15] and the prison service [16].”

• cites [11] Holman CDJ, Bass AJ, Rosman DL, Smith MB, Semmens JB, Glasson EJ, Brook EL, Trutwein B, Rouse IL, Watson CR, de Klerk NH, Stanley FJ. A decade of data linkage in Western Australia: strategic design, applications and benefits of the WA data linkage system. Aust Health Rev. 2008;32(4):766–77. sourceNot checked yet

  Not checked in the free run.

• cites [12] Young TK, Kliewer E, Blanchard J, Mayer T. Monitoring disease burden and preventive behavior with data linkage: cervical cancer among aboriginal people in Manitoba, Canada. Am J Public Health. 2000;90(9):1466–8. sourceNot checked yet

  Not checked in the free run.

• cites [13] Fischbacher CM, Bhopal R, Povey C, Steiner M, Chalmers J, Mueller G, Jamieson J, Knowles D. Record linked retrospective cohort study of 4.6 million people exploring ethnic variations in disease: myocardial infarction in South Asians. BMC Public Health. 2007;7:142. sourceNot checked yet

  Not checked in the free run.

• cites [14] Veugelers PJ, Yip AM, Kephart G. Proximate and contextual socioeconomic determinants of mortality: multilevel approaches in a setting with universal health care coverage. Am J Epidemiol. 2001;154(8):725–32. sourceNot checked yet

  Not checked in the free run.

Classified as probably not a substantial claim.

Public acceptance is crucial for ensuring the legitimacy of current practices and systems of governance for data sharing and linkage.

“Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance.”

• Also stated in: § Background · hedged

  “This may be crucial for ensuring the legitimacy of current practices and systems of governance.”

• cites [3] Wellcome Trust. The One-Way Mirror: Public attitudes to commercial access to health data. 2016. https://ipsos-mori.com/Assets/Docs/Publications/sri-wellcome-trust-commercial-access-to-health-data.pdf .Not checked yet

  Not checked in the free run.

• cites [4] Bradwell & Gallagher. FYI: The new politics of personal information. 2007. www.demos.co.uk . Accessed 03 Nov 2016.Not checked yet

  Not checked in the free run.

Classified as probably not a substantial claim.

Qualitative studies usually are based on small sample sizes that prohibit claims to being statistically representative.

“despite qualitative studies usually being based on small sample sizes that prohibit claims to being statistically representative [6, 7]”

• cites [6] Barbour RS, Barbour M. Evaluating and synthesising qualitative research: the need to develop a distinctive approach. J Eval Clin Pract. 2003;9(2):179–86. sourceNot checked yet

  Not checked in the free run.

• cites [7] Pope C, Ziebland S, Mays N. Qualitative research in health care: Analysing qualitative data. Br Med J. 2000;320:114–6. sourceNot checked yet

  Not checked in the free run.

Classified as probably not a substantial claim.

A thematic synthesis approach was adopted using Thomas and Harden's three-step technique.

“A thematic synthesis approach was adopted using Thomas and Harden’s [18] three-step technique: Free line-by-line coding of the included studies, the emergence of descriptive themes from the codes and the development of analytical themes.”

• cites [18] Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8(45):1–10.Not checked yet

  Not checked in the free run.

Classified as probably not a substantial claim.

All studies were of sufficient quality to be included in the study.

“It was agreed that all studies were of sufficient quality to be included in the study.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

There were no limitations on publication dates, languages or geographical locations.

“There were no limitations on publication dates, languages or geographical locations.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Independently, M.A. and J.S.J. coded the included studies using an inductive approach without a priori codes.

“Independently, M.A. and J.S.J. coded the included studies using an inductive approach without a priori codes.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

Each included study was individually appraised and data were extracted by the same two authors.

“Each included study was individually appraised and data were extracted by the same two authors.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

Ten further studies were excluded from the synthesis for not reporting participants' verbatim views or first-order constructs, not reporting detailed qualitative findings, not reporting findings relevant to the research topic, or for not including public responses.

“At this stage ten further studies were excluded from the synthesis for not reporting participants’ verbatim views or first-order constructs (Britten et al. 2002); not reporting detailed qualitative findings (Sandelowski and Barroso 2003); not reporting findings relevant to the research topic; or for not including public responses.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

Searches were also conducted through Google Scholar and Open Grey, scanning references of included papers and contacting experts.

“In addition, searches were conducted through Google Scholar and Open Grey as well as scanning references of included papers and contacting experts for a more inclusive result.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

Two authors separately screened titles and abstracts and read eligible full texts before reconvening to discuss their results and resolve any discrepancies.

“Two authors (M.A. and J.S.J.) separately screened titles and abstracts and read eligible full texts before reconvening to discuss their results and resolve any discrepancies.”

Probably not a substantial claim: may not pass S3 (load-bearing).

All authors met to discuss the codes/themes and to resolve any discrepancies.

“All authors met to discuss the codes/themes and to resolve any discrepancies.”

Probably not a substantial claim: may not pass S3 (load-bearing).

The Critical Appraisal Skills Programme (CASP) checklist was used to critically assess the qualitative research.

“The Critical Appraisal Skills Programme [17] checklist was used to critically assess the qualitative research.”

• cites [17] CASP. CASP Qualitative Checklist. 2013. http://www.casp-uk.net/ .Not checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

From the included studies, M.A. and J.S.J. extracted first- and second-order constructs including any reciprocal or refutational translations.

“From the included studies, M.A. and J.S.J. extracted first- and second-order constructs (the latter being the original researchers’ interpretations of the participants’ constructs) including any reciprocal or refutational translations (comparable or opposing views) [19].”

• cites [19] Britten N, Campbell R, Pope C, Donovan J, Morgan M, Pill R. Using meta-ethnography to synthesise qualitative research: A worked example. J Health Serv Res Policy. 2002;7(4):209–15. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

Three authors were each assigned three articles (totalling nine) from the included studies to validate the findings of M.A. and J.S.J.

“Three authors (R.J., C.P. and S.C.B.) were each assigned three articles (totalling nine) from the included studies to validate the findings of M.A. and J.S.J.”

Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.

While these views may not be comparable to other contexts, they are essential to understanding the needs of different social groups to better inform policies and practices.

“While these views may not be comparable to other contexts, they are indeed essential to understanding the needs of different social groups to better inform a wide variety of policies and practices.”

May combine two claims.

Anonymisation is not straightforward and, as the MRC & Wellcome Trust suggest, anonymisation is relative because identifiability runs a spectrum.

“However, anonymisation is not straightforward and, as the MRC & Wellcome Trust suggest: ‘Because identifiability runs a spectrum, anonymisation is relative’ [2] (p.10).”

• cites [2] MRC & Wellcome Trust. Access to Collections of Data and Materials for Health Research. Wellcome Trust; 2006. www.wellcome.ac.uk . Accessed 03 Nov 2016.Not checked yet

  Not checked in the free run.

Classified as probably not a substantial claim.

Haddow et al. note that where studies have explored public attitudes it is often unclear whether the research into publics' views relates to fully anonymised data, weaker forms of anonymisation or fully identifiable data.

“as Haddow et al. note, where studies have explored public attitudes ‘it is often unclear whether the research into publics’ views relates to fully anonymised data, the use of weaker forms of anonymisation or indeed fully identifiable data [34] (p. 1141).”

• cites [34] Haddow G, Bruce A, Sathanandam S, Wyatt JC. “Nothing is really safe”: a focus group study on the processes of anonymizing and sharing of health data for research purposes. J Eval Clin Pract. 2011;17(6):1140–6. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

The unequal relationships described in the Japanese study may reflect traditional doctor-patient relations in Japan that are more hierarchical and paternalistic.

“This may reflect (actual or perceived) traditional doctor-patient relations in Japan that are more hierarchical and paternalistic [20].”

• cites [20] Ishikawa H, Yamazaki Y. How applicable are western models of patient-physician relationship in Asia?: Changing patient-physician relationship in contemporary Japan. Int J Jpn Sociol. 2005;14:84–93. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

The involvement of authors without prior understandings or perspectives on the literature was valuable for ensuring an inductive approach.

“The involvement of authors without prior understandings or perspectives on the literature was valuable for ensuring an inductive approach.”

Probably not a substantial claim: may not pass S3 (load-bearing).

King et al. found that younger participants and older respondents over the age of 60 were less concerned about the privacy of their health information compared to participants in the mid age range.

“Additionally, there are some contradictory findings, for example, King et al. [26] found that younger participants and older respondents over the age of 60 were less concerned about the privacy of their health information compared to participants in the mid age range.”

• cites [26] King T, Brankovic L, Gillard P. Perspectives of Australian adults about protecting the privacy of their information in statistical databases. Int J Med Inform. 2012;81:279–89. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

The Wellcome Trust found a non-linear relationship between acceptance of commercial access to health data and age and noted that young people are not automatically more supportive/accepting.

“More recently the Wellcome Trust [3] found a non-linear relationship between acceptance of commercial access to health data and age and noted that young people are not automatically more supportive/accepting.”

• cites [3] Wellcome Trust. The One-Way Mirror: Public attitudes to commercial access to health data. 2016. https://ipsos-mori.com/Assets/Docs/Publications/sri-wellcome-trust-commercial-access-to-health-data.pdf .Not checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

Previous research by Buckley et al. commented on the lack of participation of younger people in their study.

“Previous research by Buckley et al. [25] equally commented on the lack of participation of younger people in their study.”

• cites [25] Buckley BS, Murphy AW, MacFarlane AE. Public attitudes to the use in research of personal health information from general practitioners’ records a survey of the Irish general public. J Med Ethics. 2011;37:50–5. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

The authors discussed and deliberated the coding and analysis to ensure that the findings emerged from the included studies rather than being shaped by or confirming the expectations of authors who are actively engaged in this subject matter.

“The authors discussed and deliberated the coding and analysis to ensure that the findings emerged from the included studies rather than being shaped by or confirming the expectations of authors who are actively engaged in this subject matter.”

Probably not a substantial claim: may not pass S3 (load-bearing).

In the wider literature relating to secondary uses of data in health research there has been much debate about the value and implications of anonymisation which is frequently described as representing significant challenges.

“However, in the wider literature relating to secondary uses of data in health research there has been much debate about the value and implications of anonymisation which is frequently described as representing significant challenges [28–30].”

• cites [28] Campbell B, Thomson H, Slater J, Coward C, Wyatt K, Sweeney K. Extracting information from hospital records: what patients think about consent. Qual Safety Health Care. 2007;16:404–8. sourceNot checked yet

  Not checked in the free run.

• cites [29] Chalmers J, Muir R. Patient Privacy and Confidentiality: The debate goes on; the issues are complex but a consensus is emerging. Br Med J. 2003;326:725–6. sourceNot checked yet

  Not checked in the free run.

• cites [30] Verity C, Nicoll A. Consent, confidentiality and the threat to public health surveillance. Br Med J. 2002;324:1210–3. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S1 (asserted), S3 (load-bearing).

It is argued that a certain amount of identifying information is needed in order to allow updating, linkage or validation of data.

“For example, it is argued that a certain amount of identifying information is needed in order to allow updating, linkage or validation of data [30, 31].”

• cites [30] Verity C, Nicoll A. Consent, confidentiality and the threat to public health surveillance. Br Med J. 2002;324:1210–3. sourceNot checked yet

  Not checked in the free run.

• cites [31] Strobl J, Cave E, Walley T. Data Protection Legislation: Interpretation and barriers to research. Br Med J. 2000;321:890–2. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

These findings build on previous research reporting concerns over the underrepresentation of minority populations in research, such as African Americans and LGBTs.

“These findings build on previous research reporting concerns over the underrepresentation of minority populations in research, such as African Americans [21–23] and LGBTs [24].”

• cites [21] Pentz RD, Billot L, Wendler D. Research on stored biological samples: Views of African American and White American cancer patients. Am J Med Genet. 2006;140A:733–9. sourceNot checked yet

  Not checked in the free run.

• cites [22] Mezuk B, Eaton WW, Zandi P. Participant characteristics that influence consent for genetic research in a population-based survey: the Baltimore epidemiological catchment area follow-up. Community Genet. 2008;11:171–8.Not checked yet

  Not checked in the free run.

• cites [23] Hartz SM, Johnson EO, Saccone NL, Hatsukami D, Breslau N, Bierut LJ. Inclusion of African Americans in genetic studies: what is the barrier? Am J Epidemiol. 2010;174(3):336–44. sourceNot checked yet

  Not checked in the free run.

• cites [24] Devers K, Gray B, Ramos C, Shah A, Blavin F, Waidmann T. The feasibility of using electronic health records (EHRs) and other electronic health data for research on small populations. Washington: Urban Institute; 2013.Not checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

Ohm has argued that data can either be useful or perfectly anonymous but never both.

“Ohm has argued that ‘data can either be useful or perfectly anonymous but never both’ [32] (p.1704).”

• cites [32] Ohm P. Broken promises of privacy: responding to the surprising failure of anonymity. UCLA Law Rev. 2010;57:1701–77.Not checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

As has been noted elsewhere, trust-or trustworthiness-is increasingly recognised as being central in shaping public responses.

“As has been noted elsewhere [27] trust—or trustworthiness—is increasingly recognised as being central in shaping public responses.”

• cites [27] Aitken, M., Cunningham-Burley, S., & Pagliari, C. Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme. Sci Public Policy. 2016. doi: 10.1093/scipol/scv075 . sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

The few younger people who responded were more cautious about the use of their medical information compared to older participants.

“The few that responded, were more cautious about the use of their medical information compared to older participants.”

• cites [25] Buckley BS, Murphy AW, MacFarlane AE. Public attitudes to the use in research of personal health information from general practitioners’ records a survey of the Irish general public. J Med Ethics. 2011;37:50–5. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

The UK Information Commissioner's Office has stated that in reality it can be difficult to determine whether data has been anonymised or is still personal data.

“The UK Information Commissioner’s Office (ICO) has stated that ‘[i]n reality it can be difficult to determine whether data has been anonymised or is still personal data’ [33] (p.16).”

• cites [33] ICO. Anonymisation: managing data protection risk code of practice. Cheshire: Information Commissioner’s Office (ICO); 2012.Not checked yet

  Not checked in the free run.

Classified as probably not a substantial claim.

The findings reported in the literature indicate that greater transparency may be needed.

“The findings reported in the literature indicate that greater transparency may be needed”

May combine two claims.

It appears there may be a tendency for qualitative methods to be used largely as a means for informing subsequent quantitative methods, which in turn suggests an under-appreciation of the value of qualitative methods.

“Therefore it appears there may be a tendency for qualitative methods to be used largely as a means for informing subsequent quantitative methods, which in turn suggests an under-appreciation of the value of qualitative methods.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

This leads to suggestions that awareness raising should be used to reassure members of the public through simple information provision and reflects a deficit model approach to public understanding of science.

“This leads to suggestions that awareness raising should be used to reassure members of the public through simple information provision and reflects a deficit model approach to public understanding of science [36].104”

• cites [36] Gross AG. The roles of rhetoric in the public understanding of science. Public Underst Sci. 1994;3:3–23. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.

The studies remain valuable as indicators of the range of views within the public and particularly as illustrating how opinions are expressed and how they may be informed or influenced.

“they remain valuable as indicators of the range of views within the public and particularly as illustrating how opinions are expressed and how they may be informed or influenced.”

Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.

The nuanced positions described within the included studies highlight the value of qualitative methods for not only revealing but also informing and developing public attitudes.

“The nuanced positions described within the included studies highlight the value of qualitative methods for not only revealing but also informing and developing public attitudes.”

May combine two claims.

The literature has often suggested consent may be a requirement for public acceptability, whilst simultaneously arguing that requirements for consent present obstacles to effective and necessary health research and/or surveillance.

“The literature has often suggested consent may be a requirement for public acceptability, whilst simultaneously arguing that requirements for consent present obstacles to effective and necessary health research and/or surveillance [29, 30, 35].”

• cites [29] Chalmers J, Muir R. Patient Privacy and Confidentiality: The debate goes on; the issues are complex but a consensus is emerging. Br Med J. 2003;326:725–6. sourceNot checked yet

  Not checked in the free run.

• cites [30] Verity C, Nicoll A. Consent, confidentiality and the threat to public health surveillance. Br Med J. 2002;324:1210–3. sourceNot checked yet

  Not checked in the free run.

• cites [35] Damschroder LJ, Pritts JL, Neblo MA, Kalarickal RJ, Creswell JW, Hayward RA. Patients, privacy and trust: Patients’ willingness to allow researchers to access their medical records. Soc Sci Med. 2007;64(1):223–35. sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing).

Research/researchers will be more likely to be perceived as trustworthy if transparency and public engagement involve open dialogue with members of the public and opportunities for deliberation, rather than controlled dissemination of information.

“as we have previously noted, “research/researchers will be more likely to be perceived as trustworthy if transparency and public engagement involve open dialogue with members of the public and opportunities for deliberation, rather than controlled dissemination of information” [27] (p.9).”

• cites [27] Aitken, M., Cunningham-Burley, S., & Pagliari, C. Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme. Sci Public Policy. 2016. doi: 10.1093/scipol/scv075 . sourceNot checked yet

  Not checked in the free run.

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

Such public engagement and qualitative research are increasingly frequent components of large science projects and represent, in part, efforts to increase public trust and to ensure Responsible Research and Innovation (RRI).

“Such public engagement and qualitative research are increasingly frequent components of large science projects and represent, in part, efforts to increase public trust and to ensure Responsible Research and Innovation (RRI) [27].”

• cites [27] Aitken, M., Cunningham-Burley, S., & Pagliari, C. Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme. Sci Public Policy. 2016. doi: 10.1093/scipol/scv075 . sourceNot checked yet

  Not checked in the free run.

May combine two claims.

This is significant and indicates not only that more awareness raising is needed but also that there may be significant enthusiasm amongst the public to engage more directly with and in these forms of research.

“This is significant and indicates not only that more awareness raising is needed but also that there may be significant enthusiasm amongst the public to engage more directly with and in these forms of research.”

May combine two claims.

Qualitative methods themselves-as forms of public engagement-may have a role to play in building trust which in turn may underpin greater support for secondary uses of data.

“In this way qualitative methods themselves—as forms of public engagement—may have a role to play in building trust which in turn may underpin greater support for secondary uses of data.”

Probably not a substantial claim: may not pass S2 (checkable).

Increased use of qualitative methods might be a building block for support.

“In this way increased use of qualitative methods might be a building block for support.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

A recent study conducted by Ipsos Mori on behalf of the Wellcome Trust found that participants in deliberative workshops initially tended to express preferences for opt-in consent models but shifted to a position where they felt that if they knew more about processes and safeguards they might feel more empowered and more open and trusting in decision-making around data collection and sharing (and,

“A recent study conducted by Ipsos Mori on behalf of the Wellcome Trust found that whilst participants in their deliberative workshops initially tended to express preferences for opt-in consent models through the deliberative process, they shifted to a position where they “felt that if they knew more about the processes and safeguards in place they might feel more empowered, and hence more open and”

• cites [3] Wellcome Trust. The One-Way Mirror: Public attitudes to commercial access to health data. 2016. https://ipsos-mori.com/Assets/Docs/Publications/sri-wellcome-trust-commercial-access-to-health-data.pdf .Not checked yet

  Not checked in the free run.

May combine two claims.

The findings that individual level consent may not be crucial for public acceptance and that trust in organisations and institutions may be more important in shaping public responses point to the salience of public engagement relating to authorisation approaches.

“The findings that individual level consent may not be crucial for public acceptance and that trust in organisations and institutions may be more important in shaping public responses, point to the salience of public engagement relating to authorisation approaches.”