ReviewGigaScience2019
Open Humans: A platform for participant-centered research and personal data exploration.
Review in GigaScience, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis 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
29 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Mapping ethical issues in the use of smart home health technologies to care for older persons: a systematic review.BMC medical ethics · 2023Pooled it
- Health data sovereignty: pinpointing conceptual ambiguities.Frontiers in digital health · 2026Article
- A semi-mechanistic mathematical framework for simulating multi-hormone dynamics in reproductive endocrinology.Computational and structural biotechnology journal · 2025Article
- Self-monitoring of health - user viewpoints on gathering data using consumer health technologies during leisure time.Frontiers in digital health · 2025Article
- Co-designing a wiki-based community knowledge management system for personal science.Royal Society open science · 2024Article
- Glycemic Variability Assessment in Newly Treated Exocrine Pancreatic Insufficiency With Type 1 Diabetes.Journal of diabetes science and technology · 2024Article
- Digital bioethics: introducing new methods for the study of bioethical issues.Journal of medical ethics · 2023Article
- Leveraging Mobile Technology for Public Health Promotion: A Multidisciplinary Perspective.Annual review of public health · 2023Review
- Long-Term Glucose Forecasting for Open-Source Automated Insulin Delivery Systems: A Machine Learning Study with Real-World Variability Analysis.Healthcare (Basel, Switzerland) · 2023Article
- Reimagining health services provision for neglected groups: The "personalization from below" phenomenon.Frontiers in sociology · 2023Article
- Can we share models if sharing data is not an option?Patterns (New York, N.Y.) · 2022Review
- Large-Scale Data Analysis for Glucose Variability Outcomes with Open-Source Automated Insulin Delivery Systems.Nutrients · 2022Article
- Open-source Web Portal for Managing Self-reported Data and Real-world Data Donation in Diabetes Research: Platform Feasibility Study.JMIR diabetes · 2022Article
- Implementing the Co-Immune Open Innovation Program to Address Vaccination Hesitancy and Access to Vaccines: Retrospective Study.Journal of participatory medicine · 2022Article
- Citation needed? Wikipedia bibliometrics during the first wave of the COVID-19 pandemic.GigaScience · 2022Article
- Data sharing and privacy issues in neuroimaging research: Opportunities, obstacles, challenges, and monsters under the bed.Human brain mapping · 2022Review
- Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey.Journal of medical Internet research · 2021Article
- Willingness to Share Wearable Device Data for Research Among Mechanical Turk Workers: Web-Based Survey Study.Journal of medical Internet research · 2021Article
- Addressing bias in big data and AI for health care: A call for open science.Patterns (New York, N.Y.) · 2021Review
- Using an Individual-Centered Approach to Gain Insights From Wearable Data in the Quantified Flu Platform: Netnography Study.Journal of medical Internet 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
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMany aspects of our lives are now digitized and connected to the internet. As a result, individuals are now creating and collecting more personal data than ever before. This offers an unprecedented chance for human-participant research ranging from the social sciences to precision medicine. With this potential wealth of data comes practical problems (e.g., how to merge data streams from various sources), as well as ethical problems (e.g., how best to balance risks and benefits when enabling personal data sharing by individuals).
resultsTo begin to address these problems in real time, we present Open Humans, a community-based platform that enables personal data collections across data streams, giving individuals more personal data access and control of sharing authorizations, and enabling academic research as well as patient-led projects. We showcase data streams that Open Humans combines (e.g., personal genetic data, wearable activity monitors, GPS location records, and continuous glucose monitor data), along with use cases of how the data facilitate various projects.
conclusionsOpen Humans highlights how a community-centric ecosystem can be used to aggregate personal data from various sources, as well as how these data can be used by academic and citizen scientists through practical, iterative approaches to sharing that strive to balance considerations with participant autonomy, inclusion, and privacy.
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.