OpenNotes - sporedata/researchdesigneR GitHub Wiki

General Description

OpenNotes is an international movement that aims to enhance the patient-provider relationship by encouraging clinicians to provide patients with electronic access to their clinical notes. Founded in 2010, OpenNotes has grown significantly, with 266 participating health systems across the U.S. and Canada as of 2020.
OpenNotes focuses on transparency, patient engagement, and the bidirectional sharing of health data through initiatives like the OurNotes project, which allows patients to contribute their personal health data to their clinical notes.
OpenNotes employs a strategy that includes demonstration projects, research, and advocacy to promote the sharing of clinical notes. By engaging influential voices within the healthcare community and generating demand among patients, OpenNotes addresses concerns related to workflow, liability risk, and market competition.

Factors to Consider When Using Database (for Research)

Researchers can leverage the OpenNotes platform to study the impacts of transparency in medical care. The program supports various research activities, including clinical outcomes research, comparative effectiveness research, and studies on the safety and accuracy of health care through patient data sharing.

Use Cases and Companion Methods

OpenNotes supports various research activities, including:

Clinical Outcomes Research: Evaluating the effects of open access to clinical notes on patient outcomes.
Patient Engagement Studies: Investigating how access to clinical notes affects patient engagement and satisfaction.
Comparative Effectiveness Research: Comparing different models of patient data sharing.

Key Barriers Addressed

Lack of Dialogue: Enhancing communication between patients and clinicians to foster understanding and appreciation of consumer health data uses.
Safety and Accuracy: Improving the accuracy of health care through patients’ familiarity with their personal health data.

Specific Solutions for Data Sharing between Patients and Clinicians

Engage Locally: Work with clinician and health system leadership to address concerns about sharing clinical notes, including liability and perceived burdens on healthcare teams.
Research and Advocacy: Conduct research and advocacy to highlight the benefits of data sharing.

Insights for the Field

Transparency Awareness: Leverage growing awareness of the importance of transparency to encourage patient agency over their data.

Variable Categories

The OpenNotes initiative includes several variable categories for their different projects and focus areas:

Diagnosis:
- Diagnosis and Medical History: Information related to the patient's diagnosis and medical history, aimed at improving transparency and patient understanding of their conditions.
Proxy Access:
- Caregiver Information: Data on who is authorized to access and manage the patient’s medical records on their behalf, often used for elderly or incapacitated patients.
Discharge Summary:
- Post-Hospitalization Care: Details about follow-up care, medications, and patient instructions to ensure smooth transitions from hospital to home.
Social Determinants of Health (SDOH):
- Socioeconomic Factors: Variables such as income, education, employment, and social support that influence health outcomes.
- Environmental Factors: Information on the patient's living conditions, neighborhood environment, and access to healthcare services.

Related Publications / Literature

Data Access

Institutions

Academic and research institutions can access OpenNotes data by submitting a research proposal and completing necessary compliance and review processes.

Researchers

Researchers must submit an online application, including a detailed research proposal and conflict of interest disclosure. Access to data is contingent upon internal review and approval, ensuring responsible data use.