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E-PATIENTS BLOG

Our blog highlights items of interest to those in the world of e-patients and participatory medicine. Some of our most popular topics include e-patient stories

,

e-patient resources

,

problems in healthcare

,

medical records

,

news & gossip

,

patient networks

,

policy issues

,

positive patterns

,

patient/doctor co-care

,

patients as teachers

,

reforming healthcare

,

trends & principles

,

and why participatory medicine

. Our

newest blog posts are below. You can also subscribe to our blog via

email.

SPM & HEALTH STORY COLLABORATIVE JOIN FORCES: PLEASE SHARE YOUR STORIES DURING THE PANDEMIC

by John Grohol

| May 19,

2020 | 0 Comments

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...

read more

HEALTH INFORMATICS AND WHY PARTICIPATORY HEALTHCARE IS KEY TO ITS

FUTURE

by Danny Sands, MD

| Apr 9,

2020 | 2 Comments

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...

read more

LONG-AWAITED US RULES ON DATA ACCESS AND INFORMATION BLOCKING ARE OUT

by e-Patient Dave

|

Mar 9, 2020 | 0 Comments 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...

read more

EPIC, USING SCARE TACTICS & PATERNALISM, OPPOSES ONC RULE

by John Grohol

| Jan 28,

2020 | 4 Comments

Epic is a widely used Electronic Health Record (EHR) system by thousands of hospitals across the United States. There's a very good chance that your physician uses Epic software in their everyday practice. Among many other tasks, Epic's software helps manage your...

read more

NEJM: OPENNOTES/”OURNOTES” RELEASES ITS INNOVATIVE PRE-VISIT QUESTIONNAIRE FOR COVID-19 TELEVISITS

by e-Patient Dave

|

May 12, 2020 | 0 Comments 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...

read more

WEB INTRODUCTION TO A CROWD-SOURCING PLATFORM FOR COVID-19 “INFORMATION THERAPY”

by geriynnbaumblatt

| Mar 19, 2020 | 0 Comments "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,...

read more

THREE MINUTE PATIENT VIDEO NAILS THE SUFFERING FROM INFORMATION

BLOCKING

by e-Patient Dave

|

Mar 9, 2020 | 0 Comments 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...

read more

PATIENT/CAREGIVER LETTER SUPPORTING PROPOSED HHS RULES ON IMPROVING

FLOW OF OUR DATA

by e-Patient Dave

|

Jan 26, 2020 | 71 Comments We, the undersigned, are patients, family caregivers and advocates who strongly support ONC’s rule to improve patient data flow. See our

stories.

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A NURSE WRITES FROM THE COVID-19 FRONT LINES: “THE BIGGEST BARRIER TO CARE I’VE EVER FACED”

by e-Patient Dave

|

May 7, 2020 | 3 Comments 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...

read more

COVID-19 INFORMATION RESOURCES: SPM, PETER ELIAS MD & OTHERS

by e-Patient Dave

|

Mar 17, 2020 | 2 Comments "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...

read more

“HELP ME SEE THE DRAGON I’M SLAYING”: PATHOLOGISTS MEETING DIRECTLY WITH PATIENTS

by e-Patient Dave

|

Feb 28, 2020 | 0 Comments 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...

read more

WHY I JOINED SPM: BRAD POWER

by e-Patient Dave

|

Jan 11, 2020 | 0 Comments Editor’s note: this guest post by SPM member and lymphoma survivor Brad Power (LinkedIn) shares his journey to our society and our #S4PM2019 conference last October. Members can submit guest posts to our blog (guidelines). Join SPM here. Here's the introduction

video...

read more

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