Dataset Information

Overcoming barriers to data sharing with medical image generation: a comprehensive evaluation.

ABSTRACT: Privacy concerns around sharing personally identifiable information are a major barrier to data sharing in medical research. In many cases, researchers have no interest in a particular individual's information but rather aim to derive insights at the level of cohorts. Here, we utilise generative adversarial networks (GANs) to create medical imaging datasets consisting entirely of synthetic patient data. The synthetic images ideally have, in aggregate, similar statistical properties to those of a source dataset but do not contain sensitive personal information. We assess the quality of synthetic data generated by two GAN models for chest radiographs with 14 radiology findings and brain computed tomography (CT) scans with six types of intracranial haemorrhages. We measure the synthetic image quality by the performance difference of predictive models trained on either the synthetic or the real dataset. We find that synthetic data performance disproportionately benefits from a reduced number of classes. Our benchmark also indicates that at low numbers of samples per class, label overfitting effects start to dominate GAN training. We conducted a reader study in which trained radiologists discriminate between synthetic and real images. In accordance with our benchmark results, the classification accuracy of radiologists improves with an increasing resolution. Our study offers valuable guidelines and outlines practical conditions under which insights derived from synthetic images are similar to those that would have been derived from real data. Our results indicate that synthetic data sharing may be an attractive alternative to sharing real patient-level data in the right setting.

SUBMITTER: DuMont Schutte A

PROVIDER: S-EPMC8463544 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ImportanceThe benefits of responsible sharing of individual-participant data (IPD) from clinical studies are well recognized, but stakeholders often disagree on how to align those benefits with privacy risks, costs, and incentives for clinical trialists and sponsors. The International Committee of Medical Journal Editors (ICMJE) required a data sharing statement (DSS) from submissions reporting clinical trials effective July 1, 2018. The required DSSs provide a window into current data sharing rates, practices, and norms among trialists and sponsors.ObjectiveTo evaluate the implementation of the ICMJE DSS requirement in 3 leading medical journals: JAMA, Lancet, and New England Journal of Medicine (NEJM).Design, setting, and participantsThis is a cross-sectional study of clinical trial reports published as articles in JAMA, Lancet, and NEJM between July 1, 2018, and April 4, 2020. Articles not eligible for DSS, including observational studies and letters or correspondence, were excluded. A MEDLINE/PubMed search identified 487 eligible clinical trials in JAMA (112 trials), Lancet (147 trials), and NEJM (228 trials). Two reviewers evaluated each of the 487 articles independently.ExposurePublication of clinical trial reports in an ICMJE medical journal requiring a DSS.Main outcomes and measuresThe primary outcomes of the study were declared data availability and actual data availability in repositories. Other captured outcomes were data type, access, and conditions and reasons for data availability or unavailability. Associations with funding sources were examined.ResultsA total of 334 of 487 articles (68.6%; 95% CI, 64%-73%) declared data sharing, with nonindustry NIH-funded trials exhibiting the highest rates of declared data sharing (89%; 95% CI, 80%-98%) and industry-funded trials the lowest (61%; 95% CI, 54%-68%). However, only 2 IPD sets (0.6%; 95% CI, 0.0%-1.5%) were actually deidentified and publicly available as of April 10, 2020. The remaining were supposedly accessible via request to authors (143 of 334 articles [42.8%]), repository (89 of 334 articles [26.6%]), and company (78 of 334 articles [23.4%]). Among the 89 articles declaring that IPD would be stored in repositories, only 17 (19.1%) deposited data, mostly because of embargo and regulatory approval. Embargo was set in 47.3% of data-sharing articles (158 of 334), and in half of them the period exceeded 1 year or was unspecified.Conclusions and relevanceMost trials published in JAMA, Lancet, and NEJM after the implementation of the ICMJE policy declared their intent to make clinical data available. However, a wide gap between declared and actual data sharing exists. To improve transparency and data reuse, journals should promote the use of unique pointers to data set location and standardized choices for embargo periods and access requirements.

Project description:BackgroundAfrican Americans (AAs) and other racial/ethnic minority groups continue to be underrepresented in medical research and clinical trials. Failure to create more racially diverse research cohorts can exacerbate existing health disparities among these groups.ObjectiveTo investigate best practices and strategies for enhancing participation of AAs in medical research among attendees of a preconference Institute at a faith-based public health conference.DesignQualitative study using semi-structured interviews.ParticipantsA total of 21 out of 29 attendees (90% AA) of the Institute (72% response rate).ApproachA culturally tailored preconference Institute was held at the 2017 Healthy Churches 2020 National Conference. The Institute was led by AA researchers focused on underrepresentation of AAs in medical research. Semi-structured interviews were conducted 1-year post-Institute (n=21) and were audio-recorded, transcribed verbatim, and reviewed using thematic analysis.Key resultsThe majority of attendees reported that they were more likely to participate in medical research after attending the Institute (75%). Salient learning points reported by attendees demonstrated attainment of the Institute objectives. Key themes emerged describing barriers preventing AAs from participating in medical research including fear/lack of trust, lack of information on research projects, and not being approached to participate. Key themes regarding facilitators for participation in medical research by AAs were clear communication of study objectives and research benefits along with trust in researchers.ConclusionsAttendees' perceptions of participation in medical research were largely positive following their attendance at a conference-based Institute aimed to address the underrepresentation of AAs in medical research. Our culturally tailored approach to disseminating knowledge of the research process could extend to other national conferences prioritizing AAs and other racial/ethnic minority populations to improve research participation.

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Overcoming barriers to data sharing with medical image generation: a comprehensive evaluation.

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