ArticleJournal of general internal medicine2015
Designing a system for patients controlling providers' access to their electronic health records: organizational and technical challenges.
Article in Journal of general internal medicine, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01862133 (Aspiring to Awesome- Patient Preference Privacy Selections in EMR), which is not on this map. Cited by 14 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.
Aspiring to Awesome- Patient Preference Privacy Selections in EMR
Who cites it
14 citing papers in PubMed.
- Uses of Personal Health Records for Communication Among Colorectal Cancer Survivors, Caregivers, and Providers: Interview and Observational Study in a Human-Computer Interaction Laboratory.JMIR human factors · 2022Article
- The importance of the patient's voice in nuclear cardiology.Journal of nuclear cardiology : official publication of the American Society of Nuclear Cardiology · 2021Article
- Health informatics and EHR to support clinical research in the COVID-19 pandemic: an overview.Briefings in bioinformatics · 2021Review
- Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review.Frontiers in public health · 2021Review
- Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records.Applied clinical informatics · 2020Article
- Biomedical informatics advancing the national health agenda: the AMIA 2015 year-in-review in clinical and consumer informatics.Journal of the American Medical Informatics Association : JAMIA · 2017Review
- Too Much or Too Little? How Much Control Should Patients Have Over EHR Data?Journal of medical systems · 2016Article
- Family Caregivers and Consumer Health Information Technology.Journal of general internal medicine · 2016Review
- Provider responses to patients controlling access to their electronic health records: a prospective cohort study in primary care.Journal of general internal medicine · 2015Article
- Designing a patient-centered user interface for access decisions about EHR data: implications from patient interviews.Journal of general internal medicine · 2015Article
- You, me, and the computer makes three: navigating the doctor-patient relationship in the age of electronic health records.Journal of general internal medicine · 2015Article
- Patient preferences in controlling access to their electronic health records: a prospective cohort study in primary care.Journal of general internal medicine · 2015Article
- Designing Technologies for Value-based Mental Healthcare: Centering Clinicians' Perspectives on Outcomes Data Specification, Collection, and Use.Proceedings of the SIGCHI conference on human factors in computing systems. CHI ConferenceArticle
- Article
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
backgroundElectronic health records (EHRs) are proliferating, and financial incentives encourage their use. Applying Fair Information Practice principles to EHRs necessitates balancing patients' rights to control their personal information with providers' data needs to deliver safe, high-quality care. We describe the technical and organizational challenges faced in capturing patients' preferences for patient-controlled EHR access and applying those preferences to an existing EHR.
methodsWe established an online system for capturing patients' preferences for who could view their EHRs (listing all participating clinic providers individually and categorically-physicians, nurses, other staff) and what data to redact (none, all, or by specific categories of sensitive data or patient age). We then modified existing data-viewing software serving a state-wide health information exchange and a large urban health system and its primary care clinics to allow patients' preferences to guide data displays to providers.
resultsPatients could allow or restrict data displays to all clinicians and staff in a demonstration primary care clinic, categories of providers (physicians, nurses, others), or individual providers. They could also restrict access to all EHR data or any or all of five categories of sensitive data (mental and reproductive health, sexually transmitted diseases, HIV/AIDS, and substance abuse) and for specific patient ages. The EHR viewer displayed data via reports, data flowsheets, and coded and free text data displayed by Google-like searches. Unless patients recorded restrictions, by default all requested data were displayed to all providers. Data patients wanted restricted were not displayed, with no indication they were redacted. Technical barriers prevented redacting restricted information in free textnotes. The program allowed providers to hit a "Break the Glass" button to override patients' restrictions, recording the date, time, and next screen viewed. Establishing patient-control over EHR data displays was complex and required ethical, clinical, database, and programming expertise and difficult choices to overcome technical and health system constraints.
conclusionsAssessing patients' preferences for access to their EHRs and applying them in clinical practice requires wide-ranging technical, clinical, and bioethical expertise, to make tough choices to overcome significant technical and organization challenges.
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.