ArticleJAMIA open2018
Research participation preferences as expressed through a patient portal: implications of demographic characteristics.
Article in JAMIA open, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 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
19 citing papers in PubMed.
- Preferences of research participants with experience receiving individual results for future return of results.Journal of clinical and translational science · 2026Article
- Return of results is important to heterogeneous research participants: A single-site survey.Journal of clinical and translational science · 2026Article
- Assessing the acceptability of using patient portals to recruit pregnant women and new mothers for maternal-child health research.JAMIA open · 2025Article
- Willingness of population health survey participants to provide personal health information and biological samples.BMC public health · 2024Article
- Using patient portals for large-scale recruitment of individuals underrepresented in biomedical research: an evaluation of engagement patterns throughout the patient portal recruitment process at a single site within the All of Us Research Program.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Using implementation science to evaluate a population-wide genomic screening program: Findings from the first 20,000 In Our DNA SC participants.American journal of human genetics · 2024Article
- Embedding research study recruitment within the patient portal preCheck-in.Journal of the American Medical Informatics Association : JAMIA · 2023Article
- Anticipating adaptation: tracking the impact of planned and unplanned adaptations during the implementation of a complex population-based genomic screening program.Translational behavioral medicine · 2023Article
- Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta.JAMIA open · 2023Article
- Surveying people with spinal cord injuries in Brazil to ascertain research priorities.Scientific reports · 2023Article
- Lessons Learned from the Pilot Phase of a Population-Wide Genomic Screening Program: Building the Base to Reach a Diverse Cohort of 100,000 Participants.Journal of personalized medicine · 2022Article
- Non-English Language Preference Associated With Decreased Rheumatology Telehealth Use During the COVID-19 Pandemic.ACR open rheumatology · 2022Article
- Using a Patient Portal to Increase Enrollment in a Newborn Screening Research Study: Observational Study.JMIR pediatrics and parenting · 2022Article
- Selecting EHR-driven recruitment strategies: An evidence-based decision guide.Journal of clinical and translational science · 2022Article
- Strategies and lessons learned from a longitudinal study to maximize recruitment in the midst of a global pandemic.Proceedings (Baylor University. Medical Center) · 2022Article
- Racial Differences in Patient Portal Activation and Research Enrollment Among Patients With Prostate Cancer.JCO clinical cancer informatics · 2021Article
- Public attitudes toward an authorization for contact program for clinical research.Journal of the American Medical Informatics Association : JAMIA · 2021Article
- Each patient is a research biorepository: informatics-enabled research on surplus clinical specimens via the living BioBank.Journal of the American Medical Informatics Association : JAMIA · 2021Article
- Challenges and opportunities using online portals to recruit diverse patients to behavioral trials.Journal of the American Medical Informatics Association : JAMIA · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
objectiveAs patient portals are increasingly used for research recruitment, it is important to examine the demographic makeup of research registries that are populated via portals and the factors that influence participation in these registries.
methodsWe examined the response to a routine research preference questionnaire among patients who were enrolled in a patient portal at an academic health center and characterized the sub-population that responded and was tracked in a research preferences registry. We examined the factors that influence choices in two research preferences: future contact for research opportunities and biobanking of de-identified specimens.
resultsOut of 79 834 patients to whom the questionnaire was sent, 32% responded. Of those 74% agreed to future contact and 77% to the biobank preference. We found significantly lower odds of agreement in both preferences in minority populations, especially in the population >65 years of age when stratified by race. Individuals with higher comorbidity indexes had significantly higher odds for agreement. DISCUSSION: The disparities in volunteerism as expressed by agreement to future contact and willingness to participate in biobanking are exacerbated by lower levels of enrollment in the patient portal by minorities, especially in the oldest age group. Future work should examine other socioeconomic factors and the differences across age groups, sicker individuals, and payer categories.
conclusionAlthough patient portals can be more efficient for recruitment, researchers have to be cognizant of, and proactively address, potential biases when recruiting participants from these registries.
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.