Public and Patient Attitudes Toward the Use of Their Health Information

Shickle, Darren; Suckling, Rupert; Wallace, Susan

doi:10.1201/9780203720349.ch16

Cited by 3 publications

(12 citation statements)

References 33 publications

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“…Patterns of consent were similar in the quantitative aspects of the six mixed methods papers that reported differences in consent rates between groups: male gender [21,22,45], older age [23,45,46], having a less sensitive condition [22], being of non-white ethnicity [22], long term disability [23] and having breast cancer or sickle cell disease (versus other conditions such as cystic fibrosis or colon cancer [28]) were factors associated with being more likely to consent. Participants rating themselves as having a greater knowledge of the NHS were more likely to consent in one study [45].…”

Section: Resultsmentioning

confidence: 90%

“…Six studies were carried out in the UK [11,22,23,43-45], one in Eire [46] and one in New Zealand [11]. Eight studies originated from Canada [21,24-27,47-49], with two research projects being reported by two papers each [25,47], and [26,27].…”

Section: Resultsmentioning

confidence: 99%

“…Participants rating themselves as having a greater knowledge of the NHS were more likely to consent in one study [45]. Higher socioeconomic status was associated with higher consent rates in two studies [23,45], although another study questioning patients with various conditions including cancer and diabetes found those on a lower income more likely to consent [28]. …”

Section: Resultsmentioning

confidence: 99%

“…Information about the user of the data was seen as more important than the intended use in determining whether to offer consent in some studies [22,45], while others noted that the planned use of the data was an important determinant of whether participants would consent to its use [26,42,47]. …”

Section: Resultsmentioning

confidence: 99%

“…Data and database security [22,28,46,49], and whether the data were anonymous was a concern, with participants being less restrictive when data were anonymous or unidentifiable [22,26,28]. There was apprehension in many studies that data would be sold for commercial profit, and this was generally seen as less acceptable, commanding a higher requirement for informed consent [21,23,25-27,42,44,45,47]. Release of data to insurance companies or pharmaceutical companies was often mentioned as a concern, again leading to a more restrictive consent requirement [23,26,27,42,44,45,47].…”

Section: Resultsmentioning

confidence: 99%

See 4 more Smart Citations

“Let’s get the best quality research we can”: public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study

Hill

Turner

Martin

et al. 2013

BMC Med Res Methodol

118

201

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BackgroundOpt-in consent is usually required for research, but is known to introduce selection bias. This is a particular problem for large scale epidemiological studies using only pre-collected health data. Most previous studies have shown that members of the public value opt-in consent and can perceive research without consent as an invasion of privacy. Past research has suggested that people are generally unaware of research processes and existing safeguards, and that education may increase the acceptability of research without prior informed consent, but this recommendation has not been formally evaluated. Our objectives were to determine the range of public opinion about the use of existing medical data for research and to explore views about consent to a secondary review of medical records for research. We also investigated the effect of the provision of detailed information about the potential effect of selection bias on public acceptability of the use of data for research.MethodsWe carried out a systematic review of existing literature on public attitudes to secondary use of existing health records identified by searching PubMed (1966-present), Embase (1974-present) and reference lists of identified studies to provide a general overview, followed by a qualitative focus group study with 19 older men recruited from rural and suburban primary care practices in the UK to explore key issues in detail.ResultsThe systematic review identified twenty-seven relevant papers and the findings suggested that males and older people were more likely to consent to a review of their medical data. Many studies noted participants’ lack of knowledge about research processes and existing safeguards and this was reflected in the focus groups. Focus group participants became more accepting of the use of pre-collected medical data without consent after being given information about selection bias and research processes. All participants were keen to contribute to NHS-related research but some were concerned about data-sharing for commercial gain and the potential misuse of information.ConclusionsIncreasing public education about research and specific targeted information provision could promote trust in research processes and safeguards, which in turn could increase the acceptability of research without specific consent where the need for consent would lead to biased findings and impede research necessary to improve public health.

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Section: Resultsmentioning

confidence: 90%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

“Let’s get the best quality research we can”: public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study

Hill

Turner

Martin

et al. 2013

BMC Med Res Methodol

118

201

View full text Add to dashboard Cite

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Consent and widespread access to personal health information for the delivery of care: a large scale telephone survey of consumers' attitudes using vignettes in New Zealand

et al. 2016

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ObjectivesIn light of recent health policy, to examine factors which influence the public's willingness to consent to share their health information in a national electronic health record (EHR).DesignData were collected in a national telephone survey in 2008. Respondents were presented with vignettes that described situations in which their health information was shared and asked if they would consent to such sharing. The subset, consisting of the 18 vignettes that covered proving care, was reanalysed in depth using new statistical methods in 2016.SettingAdult population of New Zealand accessible by telephone landline.Participants4209 adults aged 18+ years in the full data set, 2438 of which are included in the selected subset.Main outcome measuresFor each of 18 vignettes, we measured the percentage of respondents who would consent for their information to be shared for 2 groups; for those who did not consider that their records contained sensitive information, and for those who did or refused to say.ResultsRates of consent ranged from 89% (95% CI 87% to 92%) for sharing of information with hospital doctors and nurses to 51% (47% to 55%) for government agencies. Mixed-effects logistic regression was used to identify factors which had significant impact on consent. The role of the recipient and the level of detail influenced respondents' willingness to consent (p<0.0001 for both factors). Of the individual characteristics, the biggest impact was that respondents whose records contain sensitive information (or who refused to answer) were less willing to consent (p<0.0001).ConclusionsA proportion of the population are reluctant to share their health information beyond doctors, nurses and paramedics, particularly when records contain sensitive information. These findings may have adverse implications for healthcare strategies based on widespread sharing of information. Further research is needed to understand and overcome peoples' ambivalence towards sharing their information.

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Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

Cumyn¹,

Ménard²,

Barton³

et al. 2023

J Med Internet Res

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Background Secondary use of health data has reached unequaled potential to improve health systems governance, knowledge, and clinical care. Transparency regarding this secondary use is frequently cited as necessary to address deficits in trust and conditional support and to increase patient awareness. Objective We aimed to review the current published literature to identify different stakeholders’ perspectives and recommendations on what information patients and members of the public want to learn about the secondary use of health data for research purposes and how and in which situations. Methods Using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines, we conducted a scoping review using Medline, CINAHL, PsycINFO, Scopus, Cochrane Library, and PubMed databases to locate a broad range of studies published in English or French until November 2022. We included articles reporting a stakeholder’s perspective or recommendations of what information patients and members of the public want to learn about the secondary use of health data for research purposes and how or in which situations. Data were collected and analyzed with an iterative thematic approach using NVivo. Results Overall, 178 articles were included in this scoping review. The type of information can be divided into generic and specific content. Generic content includes information on governance and regulatory frameworks, technical aspects, and scientific aims. Specific content includes updates on the use of one’s data, return of results from individual tests, information on global results, information on data sharing, and how to access one’s data. Recommendations on how to communicate the information focused on frequency, use of various supports, formats, and wording. Methods for communication generally favored broad approaches such as nationwide publicity campaigns, mainstream and social media for generic content, and mixed approaches for specific content including websites, patient portals, and face-to-face encounters. Content should be tailored to the individual as much as possible with regard to length, avoidance of technical terms, cultural competence, and level of detail. Finally, the review outlined 4 major situations where communication was deemed necessary: before a new use of data, when new test results became available, when global research results were released, and in the advent of a breach in confidentiality. Conclusions This review highlights how different types of information and approaches to communication efforts may serve as the basis for achieving greater transparency. Governing bodies could use the results: to elaborate or evaluate strategies to educate on the potential benefits; to provide some knowledge and control over data use as a form of reciprocity; and as a condition to engage citizens and build and maintain trust. Future work is needed to assess which strategies achieve the greatest outreach while striking a balance between meeting information needs and use of resources.

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Public and Patient Attitudes Toward the Use of Their Health Information

Cited by 3 publications

References 33 publications

“Let’s get the best quality research we can”: public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study

“Let’s get the best quality research we can”: public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study

Consent and widespread access to personal health information for the delivery of care: a large scale telephone survey of consumers' attitudes using vignettes in New Zealand

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

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