References for Patient Empowerment
The following resources relate to science, activities, and groups related to Patient Empowerment.
Patient Empowerment thru the Principles of Privacy
BMJ's Patient Partnership
“In 2014 the BMJ (British Medical Journal) initiated a Patient Advisory Panel, which interacts regularly with the editors. Further, the panel is part of a larger patient-public partnership, which includes the remarkable requirement that the authors of research articles must state how they involved patients in the design & conduct of the study!
Links: - Home page of the BMJ's overall partnership program, with links to the program parts - The current list (fwiw) of advisory panel members
Patient Centered Outcomes Research Institute https://www.pcori.org/
Society for Participatory Medicine https://participatorymedicine.org/
Open Notes https://www.opennotes.org/
ONC Workforce Curriculum: Patient Centered Care https://files.healthit.gov/Component_25/Comp25_Component_Guide%20(1)/Comp25_Component_Guide%20(1).docx
Janie Appleseed Resources https://janieappleseed.org/index.php/stories/ https://janieappleseed.org/index.php/patient-driven-use-cases/
Gimme My DAM Data The song and the talk that inspired it -
Recent piece from Suzannah Fox: https://thehealthcareblog.com/blog/2019/09/19/why-should-anyone-care-about-health-data-interoperability/
Article from JAMIA that Dave shared on chat: https://academic.oup.com/jamia/advance-article-abstract/doi/10.1093/jamia/ocz142/5559299?redirectedFrom=fulltext Snippet: About one-quarter of patients and families using an online reporting system identified potential documentation inaccuracies in visit notes and more than half were considered important by patients and clinicians, underscoring the potential role of patients and families as ambulatory safety partners.