Participatory Medicine Resources for Professionals

Patients Can Help

Patients want to see good business practices in healthcare: good customer service, good technology, and good working relationships. They can see and compare the customer service in other industries and can help healthcare get better at it.

We also understand the economic and cultural pressures providers face today: increasing pressure to see more patients, an explosion of new data to keep up with, insurance clerks who veto a professional’s recommendations, demands to adopt EMRs, and despite the rising cost of care, incessant pressure not to pay providers more.

Engaged, motivated, well-informed “e-patients” are more involved in their own care. They can often find information that providers don’t have time (or reimbursement) to pursue.

Our Guiding Principles:

To guide patients and caregivers to be actively engaged in their health and health care experiences.
To guide health professional practices where patient experience and contribution is an integral goal of excellence.
To encourage mutual collaboration among patients, health professionals, caregivers and others allowing them to partner in determining care.

Patient engagement involves a shift in perspective, rights, and responsibilities. Rich conversations await us as patients and providers alike shift toward the shared responsibilities of participatory medicine. Participatory medicine is not about patients taking over.

E-Patients Whitepaper or a shorter version compiled by E-Patient Dave

Rare Disease Resources for Patients, Caregivers & Medical Professionals

OpenNotes – a project of the Robert Wood Johnson Foundation

Presentations by Danny Sands MD on Participatory Medicine

Transforming Health Care Delivery Through Consumer Engagement, Health Data Transparency, and Patient-Generated Health Information – D. Z. Sands, J. S. Wald

Patient Toolkit from the Society to Improve Diagnosis in Medicine

Let Patients Help! – a book by E-Patient Dave

The Pledge of the patient-centered physician – by Zack Berger MD

Healthcare related research by Pew Research Center: The Intersection of Health Care, Social Media, and Digital Strategy – by Susannah Fox