e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
It’s Time to Acknowledge the Invisible Caregivers Among Us
I received an uncharacteristically anxious text from my friend Aileen: “I am having an emergency with my Mom. Please call ASAP.” When I last talked to Aileen, her mother’s dementia had been worsening slowly. A little more confusion, a stovetop left burning after...
Video Series: Doctor to Doctor – What is Participatory Medicine?
Conversations between SPM co-founder and Chief Advocacy Officer, Danny Sands MD and Annie Brewster MD,...
Pay Attention to the Symptoms, but Don’t Ignore the Patient
Usually, I write from the perspective of a patient advocate diagnosed with Wolfram-like syndrome, a rare disorder of the endoplasmic reticulum that typically manifests first with optic atrophy, then insulin-dependent diabetes. For the purposes of this blog post,...
Video Series: Doctor to Doctor
Conversations between SPM co-founder and Chief Advocacy Officer, Danny Sands MD and Annie Brewster MD,...
Seeing Red about Pink Eye
I don’t like having something wrong with my body. I don’t like feeling achy. I can’t stand fevers. I don’t like being sick. When I do get ill, I want whatever healthcare team I deal with to be full of empathy and quick to figure out what ails me. If that sounds a bit...
Boost Health IT’s Impact: Think With a Participatory Lens
In 2013 the Institute of Medicine published a landmark 436 page consensus report, Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Its summary contains the characteristics of a continuously learning system: Note that the second...
Participation starts with understanding goals, values and preferences
For the past 20 years, I’ve been involved in designing diverse health experiences: from diagnostic to adherence tools, from software for cytostatic preparation, to integrated mobile health solutions. During these projects, I cannot say that the patient was never...
Join SPM in August at the HIMSS21 Conference
The HIMSS21 Global Health Conference & Exhibition brings you the world-class education, cutting-edge products and solutions, and unique networking opportunities you need to solve your biggest health information and technology challenges -- all at one time, all in...
From the Heart: My Patient Engagement Journey
When my daughter Ada was an infant, a cardiologist told me that she needed open heart surgery, the sooner the better. Ada had been born with a small hole in her heart (a VSD), which, the doctor said, could stunt her growth and potentially cause heart failure or brain...
Manifesto Made Real: Sharing My Story Helps Others Share Theirs
Stories have the power to punch you in the gut. Of course I mean figuratively, but in many real ways, literally too. I literally feel pain--coupled with inspiration--when fellow cancer survivors share their experiences, struggles and fears. Stories have the power to...
Health Information Technology Must Enhance Collaboration and Patient Care
The pressures of healthcare payment has forced physicians to move patients through the office as quickly as possible, and that is robbing us of high-value services that we can provide, particularly to educate and engage in shared decision making with our patients. I...
Moving Forward to Make SPM Stronger
As you know over the past year we at SPM have been involved in rethinking our organization. How can we make it stronger? More sustainable? More impactful? And more meaningful to our members and corporate partners? As part of this we are restructuring the organization...
