Trial reportJournal of medical ethics2006
Impact of privacy legislation on the number and characteristics of people who are recruited for research: a randomised controlled trial.
Trial report in Journal of medical ethics, 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 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
26 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Strategies to improve recruitment to randomised trials.The Cochrane database of systematic reviews · 2026Pooled it
- Pooled it
- Strategies to improve retention in randomised trials.The Cochrane database of systematic reviews · 2021Pooled it
- Strategies to improve recruitment to randomised trials.The Cochrane database of systematic reviews · 2018Pooled it
- Trial
- A cluster randomized controlled trial of an online psychoeducational intervention for people with a family history of depression.BMC psychiatry · 2019Trial
- Trial
- Trial
- Cluster randomized controlled trial of a psycho-educational intervention for people with a family history of depression for use in general practice.BMC psychiatry · 2013Trial
- Trial
- The impact of HIPAA authorization on willingness to participate in clinical research.Annals of epidemiology · 2007Trial
- Patient engagement and shared decision-making in trial recruitment intervention studies: a systematic review.Research involvement and engagement · 2025Review
- Describing the content of trial recruitment interventions using the TIDieR reporting checklist: a systematic methodology review.BMC medical research methodology · 2024Article
- Overcoming Barriers to Parkinson Disease Trial Participation: Increasing Diversity and Novel Designs for Recruitment and Retention.Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics · 2020Review
- Cohort profile: ESPRESSO (Epidemiology Strengthened by histoPathology Reports in Sweden).Clinical epidemiology · 2019Article
- Randomized Quality Improvement Trial of Opting-In Versus Opting-Out to Increase Influenza Vaccination Rates during Pregnancy.AJP reports · 2018Article
- Characteristics associated with quality of life among people with drug-resistant epilepsy.Journal of neurology · 2017Article
- Practical application of opt-out recruitment methods in two health services research studies.BMC medical research methodology · 2017Article
- A Psycho-Educational Intervention for People with a Family History of Depression: Pilot Results.Journal of genetic counseling · 2017Article
- The experience of accommodating privacy restrictions during implementation of a large-scale surveillance study of an osteoporosis medication.Pharmacoepidemiology and drug safety · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPrivacy laws have recently created restrictions on how researchers can approach study participants.
methodIn a randomised trial of 152 patients, 50-74 years old, in a family practice, 60 were randomly selected to opt-out and 92 to opt-in methods. Patients were sent an introductory letter by their doctor in two phases, opt-out before and opt-in after introduction of the new Privacy Legislation in December 2001. Opt-out patients were contacted by researchers. Opt-in patients were contacted if patients responded by email, free telephone number or a reply-paid card.
resultsOpt-in recruited fewer patients (47%; 43/92) after invitation compared with opt-out (67%; 40/60); (-20%; [-4% to -36%]). No proportional difference in recruitment was found between opt-in and opt-out groups varied by age, sex or socioeconomic status. The opt-in group had significantly more people in active decision-making roles (+30%; [10% to 50%]; p = 0.003). Non-significant trends were observed towards opt-in being less likely to include people with lower education (-11.8%; [-30% to 6.4%]; p = 0.13) and people who were not screened (-19.1%; [-40.1% to 1.9%]; p = 0.08). Opt-in was more likely to recruit people with a family history of colorectal cancer (+12.7%; [-2.8%, 28.2%]; p = 0.12).
conclusionsThe number of participants required to be approached was markedly increased in opt-in recruitment. Existing participants (eg, screening attendees) with a vested interest such as increased risk, and those preferring an active role in health decision making and with less education were likely to be recruited in opt-in. Research costs and generalisability are affected by implementing privacy legislation.
Indexed as
Identifiers
What OpenQuestion holds
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.