ArticleBMJ open2019
Sharing individual participant data from clinical studies: a cross-sectional online survey among Italian patient and citizen groups.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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
13 citing papers in PubMed.
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- Contribution and legacy: a qualitative study of older people's attitudes about sharing their routinely collected health data for research purposes in New Zealand.BMC medical ethics · 2025Article
- Six solutions for clinical study data sharing in Germany.BMC medical research methodology · 2025Article
- Exploring the Italian Population's attitudes toward health data sharing for healthcare purpose and scientific research: a cross-sectional study.Journal of public health (Oxford, England) · 2025Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Exploring patient perspectives on the secondary use of their personal health information: an interview study.BMC medical informatics and decision making · 2023Article
- Patients' knowledge, preferences, and perspectives about data protection and data control: an exploratory survey.Frontiers in pharmacology · 2023Article
- How do we measure the costs, benefits, and harms of sharing data from biomedical studies? A protocol for a scoping review.Open research Europe · 2023Article
- Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Journal of medical ethics · 2022Review
- Jordanian views regarding sharing of medical data for research: A cross-sectional study during COVID-19 pandemic.PloS one · 2022Observational
- Status, use and impact of sharing individual participant data from clinical trials: a scoping review.BMJ open · 2021Article
- Italian public's views on sharing genetic information and medical information: findings from the 'Your DNA, Your Say' study.Wellcome open research · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo gather knowledge on the current debate, opinions and attitudes of Italian patient and citizen groups on individual participant data (IPD) sharing from clinical studies.
designCross-sectional online survey. SETTING AND
participantsA 22-item online questionnaire was sent by email to 2003 contacts of patient and citizen groups in Italy. We received 311 responses, checked for duplicate respondents (16); 295 single groups responded, 280 providing questionnaires eligible for analysis (response rate 15%). Ninety (32.1%) dealt with oncology and palliative care, 175 (46.2%) operated locally or regionally and 136 (48.6%) were involved in clinical research. OUTCOME MEASURE: Data on Italian patient and citizen groups' self-reported knowledge, attitudes and opinions on IPD sharing, mechanisms for IPD access, advantages and risks.
resultsHalf the respondents (144 out of 280, 51%) had some knowledge about the IPD sharing debate, and 60 (42%) stated they had an official position (35 in favour, 19 in favour with restrictions, 2 against, 1 neither for nor against, 3 missing). Nineteen discussed the topic encouraged by this survey; 39% approved broad access by researchers and other professions and identified information to participants, data de-identification, secure archives, access agreements and sanctions for misuse as important aspects of IPD sharing models. Respondents highlighted re-identification, privacy and re-use of data for purposes that participants do not agree on, as main risks, advancement of innovation and reducing waste in research as main advantages. Around half believed IPD sharing would not discourage study participation.
conclusionsHalf the respondents were aware of the debate. Those who had an official position were mainly in favour of IPD sharing. Many supported broad access, asking for conditions important for building trust in entities that handle IPD sharing.Although limited by the low response rate, these findings reinforce the demand for reliable and transparent processes where accountabilities are clear.
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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.