e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
The Health Story Collaborative & the Power of Healing Narratives
Join a live virtual Healing Story Session on June 22! “Pain, suffering, and ambivalence can co-exist with peace, joy, and self-love. Healing can take many forms. Sharing our stories helps others to find their way, and reminds us all that we are not alone.” -- Annie...
Haiku as a path to resilience in the COVID-19 era: #HaikuChallenge20
Raising our resilience in times of great stress – through haiku – can boost our ability to navigate pain & suffering. From a nurse who’s experienced great loss
Courage and resilience help face the uncertainty of coronavirus
Guest post by empowered patient Howard Chang. See bio at end. I’m a highly engaged patient advocate who has faced many challenges. To my unhappy surprise, the coronavirus pandemic and lockdown has revealed once again how much I still struggle with the need to be in...
SPM & Health Story Collaborative Join Forces: Please Share Your Stories During the Pandemic
The Society for Participatory Medicine (SPM) and the Health Story Collaborative (HSC) are partnering during this time to bring the power of storytelling to health care and explore what it means to practice participatory medicine in times of COVID-19. Please read the...
NEJM: OpenNotes/”OurNotes” releases its innovative pre-visit questionnaire for COVID-19 televisits
This morning the New England Journal of Medicine released the latest publication about OpenNotes. The news: an innovative pre-visit form created for the "OurNotes" study has been released before the study is completed, for other providers to use to improve televisits...
A nurse writes from the COVID-19 front lines: “the biggest barrier to care I’ve ever faced”
Editor's note: This post is from Amber Soucy MSN, RN, a board member of our Society for Participatory Medicine. Like many front-line health workers she hides the stress (see her profile photo at right), but this era is tough in ways nobody ever signed up for, and this...
Health informatics and why participatory healthcare is key to its future
Prologue from Dr. Sands: I trained in clinical informatics because of my belief that we needed to better empower healthcare professionals with information technology so they could take better care of patients, and spent many years creating and implementing these...
Web introduction to a crowd-sourcing platform for COVID-19 “information therapy”
"Information therapy" has long been part of the participatory medicine mindset. (See our 2007 post that mentions Josh Seidman PhD's Center for Information Therapy - he went on to be president of SPM.) In the COVID-19 era, now more than ever, it’s essential that clear,...
COVID-19 Information Resources: SPM, Peter Elias MD & Others
"The cure for anxiety is knowledge and preparation." That line is from the hip and edgy (and smart) Stanford doc @ZDoggMD in the amazing live conversation on YouTube he had with his 12 year old daughter last Friday. Here are some resources. Society for Participatory...
Long-awaited US rules on data access and information blocking are out
The long-awaited rules on data access have been published this morning from two key parts of the US Department of Health & Human Services. I'll expand this post with more links as we digest what's been offered and will unfold in the coming week. The ONC rule...
Three minute patient video nails the suffering from information blocking
Six weeks ago we hosted the Patient/caregiver letter supporting proposed HHS rules on improving flow of our data. It's a crowdsourced collection of stories of how patients suffered, were harmed, incurred costs or delays because their own health data wasn't at the...
“Help me see the dragon I’m slaying”: pathologists meeting directly with patients
Now this is patient-centered care. This may be the most wonderful participatory innovation I've seen since OpenNotes in 2012. This one's completely different: OpenNotes is about patient access to the medical record, but this one invites patients to see their tissue...
