Acceptability of opt‐out consent in a hospital patient population

Boulos, Daniel; Morand, Eric Francis; Foo, Michelle; Trivedi, Janki Dhaval; Lai, Ruth; Huntersmith, Rachel; Zhang, Karen; Stark, Claire Brigid; Le, Suong

doi:10.1111/imj.13666

Cited by 15 publications

(12 citation statements)

References 14 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Six studies from Australia [21,36,48,49,59,61] and two from New Zealand [43,54] discussed consent preferences and represented a total of 42,104 respondents. While seeking consent to use data should be the 'cornerstone' of contemporary research practice [49], views on consent about the use of health data for research ranged from not important to the need to provide detailed information [36].…”

Section: Studies From Australia and New Zealandmentioning

confidence: 99%

“…Where data was to be used for epidemiological research, respondents in a mixed-methods study were divided about the requirement for consent [49]. Opt-out consent was considered acceptable to 54% of the respondents in one study, but nearly one-third (28%) preferred an opt-in method and a fifth had no preference (19%) [21]. The use of a hybrid consent model was proposed in a quantitative study from New Zealand [54].…”

Section: Studies From Australia and New Zealandmentioning

confidence: 99%

“…A small percentage (approximately 4%) of respondents were not supportive of using medical data for research [28,30,55]. In an Australian study, 46% of respondents assumed that their health data was already used for medical research, without explicit consent [21], and in a second study, respondents believed that health data was a similar resource to tissue samples [22]. Several articles discussed preferences in relation to the levels of permission required to access data and varied by the type of data to be accessed.…”

Section: Support For Medical Research and Permission To Access Datamentioning

confidence: 99%

See 2 more Smart Citations

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent

et al. 2021

View full text Add to dashboard Cite

Background We aimed to synthesise data on issues related to stakeholder perceptions of consent for the use of secondary data. To better understand the current literature available, we conducted a systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data. Methods EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO and ProQuest databases were searched. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design or disease setting. One author screened articles for eligibility and two authors were involved in the full-text review process. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative studies. Results This paper focuses on a subset of 47 articles identified from the wider search and focuses on the issue of consent. Issues related to privacy, trust and transparency, and attitudes of healthcare professionals and researchers to secondary use and sharing of data have been dealt with in previous publications. Studies included a total of 216,149 respondents. Results indicate that respondents are generally supportive of using health data for research, particularly if the data is de-identified or anonymised. The requirement by participants to obtain consent prior to the use of health data for research was not universal, nor is the requirement for this always supported by legislation. Many respondents believed that either no consent or being informed of the research, but not providing additional consent, were sufficient. Conclusions These results indicate that individuals should be provided with information and choice about how their health data is used and, where feasible, a mechanism to opt-out should be provided. To increase the acceptability of using health data for research, health organisations and data custodians must provide individuals with concise information about data protection mechanisms and under what circumstances their data may be used and by whom. Systematic review registration PROSPERO CRD42018110559 (update June 2020).

show abstract

Section: Studies From Australia and New Zealandmentioning

confidence: 99%

Section: Studies From Australia and New Zealandmentioning

confidence: 99%

Section: Support For Medical Research and Permission To Access Datamentioning

confidence: 99%

See 1 more Smart Citation

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent

et al. 2021

View full text Add to dashboard Cite

show abstract

“…Research is needed to determine the optimal strategies for obtaining informed consent in this situation. [74][75][76] No evidence could be found for interventions targeting housing facilities for refugees, although they play an important role in the transmission and spreading of infectious diseases [21]. The effect of turn-over of refugees on vaccination coverage in refugee camps shows that it is easier to implement vaccination campaigns during the first months after arrival in more stable camps, but this study did not investigate overall housing conditions or number of housing units [57].…”

Section: Key Resultsmentioning

confidence: 99%

Reducing burden from respiratory infections in refugees and immigrants: a systematic review of interventions in OECD, EU, EEA and EU-applicant countries

Lambert

Stete

Balmford

et al. 2020

Preprint

View full text Add to dashboard Cite

Background Respiratory diseases are a major reason for recently arrived migrants seeking health care in countries of arrival. The burden of respiratory diseases in refugees is exacerbated by poor living conditions and crowding. The lack of synthesised evidence and guideline-relevant information to reduce morbidity and mortality from respiratory infections endangers this population. Methods A systematic review of all controlled and observational studies assessing interventions targeting the treatment, diagnosis and management of respiratory infections in refugees and immigrants in OECD, EU, EEA and EU-applicant countries published between 2000 and 2019 in MEDLINE, CINAHL, PSYNDEX and Web of Science. Results Nine of 5779 identified unique records met our eligibility criteria. Seven studies reported an increase in vaccine coverage from 2% – 52% after educational multilingual interventions for respiratory-related childhood diseases (4 studies) and for influenza (5 studies). There was limited evidence in one study that hand sanitiser reduced rates of upper respiratory infections and when provided together with face masks also the rates of influenza-like-illness in a hard to reach migrant neighbourhood. In outbreak situations of vaccine-preventable diseases, secondary cases and outbreak hazards were reduced by general vaccination strategies early after arrival but not by serological testing after exposure (1 study). We identified evidence gaps regarding interventions assessing housing standards, reducing burden of bacterial pneumonia and implementation of operational standards in refugee care and reception centres. Conclusions Multilingual health literacy interventions should be considered to increase uptake of vaccinations in refugees and immigrants. Well designed controlled studies on housing and operational standards in refugee population early after arrival as well as adequate ways to gain informed consent for early vaccinations in mass housing is required to inform guidelines.

show abstract

“…Research is needed to determine the optimal strategies for obtaining informed consent in this situation. [74][75][76] No evidence could be found for interventions targeting housing facilities for refugees and immigrants, although they play an important role in the transmission and spreading of infectious diseases [15]The effect of turn-over of refugees and immigrants on vaccination coverage in refugee camps shows that it is easier to implement vaccination campaigns during the rst months after arrival in more stable camps, but this study did not investigate overall housing conditions or number of housing units [66]. We did not nd any controlled studies of interventions to reduce morbidity and mortality from relevant severe respiratory diseases such as bacterial pneumonia or interventions affecting the latency to diagnosis in airway infections.…”

Section: Key Resultsmentioning

confidence: 99%

Reducing burden from respiratory infections in refugees and immigrants: a systematic review of interventions in OECD, EU, EEA and EU-applicant countries

Lambert

Stete

Balmford

et al. 2020

Preprint

View full text Add to dashboard Cite

Background: Respiratory diseases are a major reason for refugees and other immigrants seeking health care in countries of arrival. The burden of respiratory diseases in refugees is exacerbated by sometimes poor living conditions characterised by crowding in mass accommodations and basic living portals. The lack of synthesised evidence and guideline-relevant information to reduce morbidity and mortality from respiratory infections endangers this population.Methods: A systematic review of all controlled and observational studies assessing interventions targeting the treatment, diagnosis and management of respiratory infections in refugees and immigrants in OECD, EU, EEA and EU-applicant countries published between 2000 and 2019 in MEDLINE, CINAHL, PSYNDEX and Web of Science.Results: Nine of 5779 identified unique records met our eligibility criteria. Seven studies reported an increase in vaccine coverage from 2% – 52% after educational multilingual interventions for respiratory-related childhood diseases (4 studies) and for influenza (5 studies). There was limited evidence in one study that hand sanitiser reduced rates of upper respiratory infections and when provided together with face masks also the rates of influenza-like-illness in a hard to reach migrant neighbourhood. In outbreak situations of vaccine-preventable diseases, secondary cases and outbreak hazards were reduced by general vaccination strategies early after arrival but not by serological testing after exposure (1 study). We identified evidence gaps regarding interventions assessing housing standards, reducing burden of bacterial pneumonia and implementation of operational standards in refugee care and reception centres.Conclusions: Multilingual health literacy interventions should be considered to increase uptake of vaccinations in refugees and immigrants. Immediate vaccinations upon arrival at refugee housings may reduce secondary infections and outbreaks. Well-designed controlled studies on housing and operational standards in refugee and immigrant populations early after arrival as well as adequate ways to gain informed consent for early vaccinations in mass housing is required to inform guidelines.

show abstract

Acceptability of opt‐out consent in a hospital patient population

Cited by 15 publications

References 14 publications

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent

Reducing burden from respiratory infections in refugees and immigrants: a systematic review of interventions in OECD, EU, EEA and EU-applicant countries

Reducing burden from respiratory infections in refugees and immigrants: a systematic review of interventions in OECD, EU, EEA and EU-applicant countries

Contact Info

Product

Resources

About