Page tree
Skip to end of metadata
Go to start of metadata

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.



  • No labels

2 Comments

  1. GDPR is a major motivation in the EU to empower individuals. See the HL7 Security workgroup evaluation of FHIR - GDPR

  2. Has anyone looked into "OneRecord" – onerecord.com ??? I got a response that they have a FHIR based PHR that is fully in the patient's hands. The web-site is not all that transparent.