ArticleJournal of the American Medical Informatics Association : JAMIA2021
Identifying and prioritizing benefits and risks of using privacy-enhancing software through participatory design: a nominal group technique study with patients living with chronic conditions.
Article in Journal of the American Medical Informatics Association : JAMIA, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 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
2 citing papers in PubMed, 8 citations in OpenAlex.
- Adapting the Nominal Group Technique to a virtual version: an experience report.Revista da Escola de Enfermagem da U S P · 2024Article
- Views on increased federal access to state and local National Syndromic Surveillance Program data: a nominal group technique study with state and local epidemiologists.BMC public health · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveWhile patients often contribute data for research, they want researchers to protect their data. As part of a participatory design of privacy-enhancing software, this study explored patients' perceptions of privacy protection in research using their healthcare data. MATERIALS AND
methodsWe conducted 4 focus groups with 27 patients on privacy-enhancing software using the nominal group technique. We provided participants with an open source software prototype to demonstrate privacy-enhancing features and elicit privacy concerns. Participants generated ideas on benefits, risks, and needed additional information. Following a thematic analysis of the results, we deployed an online questionnaire to identify consensus across all 4 groups. Participants were asked to rank-order benefits and risks. Themes around "needed additional information" were rated by perceived importance on a 5-point Likert scale.
resultsParticipants considered "allowance for minimum disclosure" and "comprehensive privacy protection that is not currently available" as the most important benefits when using the privacy-enhancing prototype software. The most concerning perceived risks were "additional checks needed beyond the software to ensure privacy protection" and the "potential of misuse by authorized users." Participants indicated a desire for additional information with 6 of the 11 themes receiving a median participant rating of "very necessary" and rated "information on the data custodian" as "essential."
conclusionsPatients recognize not only the benefits of privacy-enhancing software, but also inherent risks. Patients desire information about how their data are used and protected. Effective patient engagement, communication, and transparency in research may improve patients' comfort levels, alleviate patients' concerns, and thus promote ethical research.
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.