ArticleQuality & safety in health care2007
Extracting information from hospital records: what patients think about consent.
Article in Quality & safety in health care, 2007. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 4 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
18 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency.Systematic reviews · 2020Pooled it
- "Giving something back": A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland.Wellcome open research · 2018Pooled it
- Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies.BMC medical ethics · 2016Pooled it
- "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.BMC medical research methodology · 2013Pooled it
- Qualitative data sharing practices in clinical trials in the UK and Ireland: towards the production of good practice guidance.HRB open research · 2023Article
- Routinely collected data and patient-centred research in anaesthesia and peri-operative care: a narrative review.Anaesthesia · 2021Review
- A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent.Systematic reviews · 2021Article
- Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.Journal of medical Internet research · 2020Article
- Informed consent within a learning health system: A scoping review.Learning health systems · 2020Article
- A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.Health policy (Amsterdam, Netherlands) · 2019Review
- Article
- Eliciting meta consent for future secondary research use of health data using a smartphone application - a proof of concept study in the Danish population.BMC medical ethics · 2017Article
- The acceptability of conducting data linkage research without obtaining consent: lay people's views and justifications.BMC medical ethics · 2015Review
- Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK.International journal of medical informatics · 2015Article
- The establishment of an ISO compliant cancer biobank for Jordan and its neighboring countries through knowledge transfer and training.Biopreservation and biobanking · 2014Article
- Patient and public views on electronic health records and their uses in the United kingdom: cross-sectional survey.Journal of medical Internet research · 2013Article
- 'Never heard of it'- understanding the public's lack of awareness of a new electronic patient record.Health expectations : an international journal of public participation in health care and health policy · 2010Article
- Sorry, You Can't Have That Information: Data Holder Confusion Regarding Privacy Requirements for Personal Health Information and the Potential Chilling Effect on Health Research.Healthcare policy = Politiques de sante · 2009Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
objectiveThere is increasing regulation and concern about the use of material from patients' records. Studies on patients' views have focused on primary care and on use of material for research. This study investigated patients' preferences about whether and how doctors should seek permission for use of specified items of anonymised information from their hospital records for clinical audit, teaching, national data collection and research.
methodA specially designed questionnaire sent to recently discharged patients under the care of medical and surgical specialists.
results166/316 (53%) patients completed the questionnaires. The percentage of respondents who "definitely wanted" or "preferred" to be asked for permission for use of anonymised information was highest for medical history (21%) and reasons for treatment (20%). The purpose for which information was requested (eg, research, audit) made little difference to the overall percentages (range 10-12%). 21 (13%) patients "definitely wanted" to be asked for permission for use of some item or proposed use of information--most had no preference or preferred not to be asked. The most popular method for asking permission was signing a form while in hospital, rather than by specific requests later.
conclusionsMost hospital patients have no preference or prefer not to be asked permission for doctors to use information from their records. About 1 in 8 patients would like to be asked for permission, some even for clinical audit of outcomes--although a minority, this could compromise thorough clinical audit. Systems for obtaining permission when patients are admitted to hospital need to be considered. Resolution of uncertainties surrounding legislation on the use of information would be helpful to clinicians.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.