Participatory Medicine Resources for Providers
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.
Patients can help
Patients want to see good business practices in healthcare: good customer service, good IT, 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, and can often find information that providers don’t have time (or reimbursement) to pursue.
- E-Patients Whitepaper or a shorter version compiled by E-Patient Dave
- 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
The Society for Participatory Medicine is a 501(c)(3) not-for-profit membership organization that seeks to encourage mutual collaboration among patients, health professionals, caregivers and others across the continuum of care. The Society provides a forum for its members to interact and exchange ideas on health issues, influence policy, advocate, conduct research, educate patients, caregivers, and health care professionals in best practices in participatory medicine. SPM fosters initiatives that impact the quality, efficacy, safety and viability of healthcare policy and practice.
- Dell Medical School and the Future of Care--Jon Lebkowsky
- Participatory Personalized Medicine in Action: Pharmacogenomics in Primary Care--Ileana Balcu
- Diabetes patient leaders: apply by 2/15 for fully funded #MasterLab Leadership Institute--e-Patient Dave
- Precision Medicine For Me (a new open collaboration) launches at #PMWC17--e-Patient Dave
- A Framework for Designing Digital Health Tools with Empathy
- Electronic Screening to Increase Identification of Risk: Lessons Learned in the Implementation of an mHealth Risk Assessment Strategy in an Urban Primary Care Environment
- Use of Conjoint Analysis to Determine Patient Preferences for Surgical Treatment of Urethral Stricture Disease
- Exploring Self-Tracking as a Participatory Research Activity Among Women with Endometriosis