My Participatory Medicine Story: Osteonecrosis / Avascular Necrosis
My name is Alexandra Albin (msaxolotl on Twitter) and I have an orthopedic condition called osteonecrosis or avascular necrosis (AVN). AVN is a painful and debilitating bone disease that typically affects long bones, is caused by a loss of blood supply to the bone, and can lead to bone degeneration and the collapse of joint surfaces.
AVN can happen for many reasons. In my case it was the result of medications — steroids —given for a misdiagnosed condition of Multiple Sclerosis (MS) in 1994. That was my third strange neurological episode over several years of what was suspected to be MS, but never confirmed. One spinal ...
Source: Society for Participatory Medicine - July 28, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Member Updates Newsletter Alexandra Albin AVN CEO of my own body osteonecrosis paralyzed baldder participatory medicine vascular Necrosis Source Type: news
Don ’ t Stop Thinking About Tomorrow: How Participatory Medicine Helped My Family
On Halloween night 2014, my mother and I found ourselves sitting in an executive suite at the Verizon Center in Washington, DC, eagerly awaiting to see my favorite band, Fleetwood Mac. I know it may be a little odd that someone my age, which at the time was 21, is obsessed with that band and not something more “hip” like one of the flavor of the week popstars, but what can I say? I have good taste in music, thanks in part to my mother.
As the lights in the arena went down and Stevie Nicks and the group took the stage, I couldn’t help but think how lucky I was to be here with my mother. Looking back now, it is quite ...
Source: Society for Participatory Medicine - July 28, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Member Updates Newsletter empowered patient family participatory medicine Patient Empowerment patient stories Tracy Zervakis Source Type: news
Board Meeting May 17, 2016
Participants: Kyra Bobinet, Peter Elias, Nancy Finn, John Grohol, Sarah Krug, Mark Reifsteck, Danny Sands, Joe Ternullo, Jon Wald, Peggy Zuckerman.
Minutes Approved
Education, Peter Elias
Have a team to developing participatory medicine curriculum
The course module we were working on has been completed.
Learning Exchange, Sarah Krug
The purpose of the Learning Exchange is to produce a webinar that will showcase members of our Society and how their work is pushing the needle to advance participatory medicine. Our plan is to have our board members do a trail run demo of the Learning Exchange and then solicit participation ...
Source: Society for Participatory Medicine - July 21, 2016 Category: Journals (General) Authors: Nancy Finn Tags: Executive Minutes News Source Type: news
The Participatory Approach to Personalized Medicine
Realizing personalized medicine’s full benefits will require active patient involvement. This is the first in a series of articles defining personalized medicine in the context of participatory medicine. The series will explore how current best practices can contribute to improved medical outcomes, reduced medication adverse reactions, increased patient satisfaction and overall value.
What is “personalized medicine?”
Personalized medicine, which is also called precision or individualized medicine, is an evolving field in which physicians use certain diagnostic tests to determine which medical treatments w...
Source: Society for Participatory Medicine - July 14, 2016 Category: Journals (General) Authors: John Hoben Tags: Newsletter biomarkers individualized medicine participatory approach Patient Involvement personalized medicine Source Type: news
Just the Facts Please: What You Don ’ t Know Could Harm You!
This article is based on one chapter of my book, The Patients’ Time Has Come (Canada: Med-Aware Publications, 2016).
[2] Rankin, The Patients’ Time Has Come, 122.
[3] Side-Effects: Connect™ is an educational tool designed by Elizabeth Rankin. By class of drug, the tool assists professionals and patients understand the relationship between their prescribed medication and the symptoms they could present with for which they may or may not have been given a diagnosis or recognize their side-effects.
[4] The Patients’ Time Has Come outlines what’s needed and proposed to provide consent to treatment documents that are ...
Source: Society for Participatory Medicine - July 14, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Newsletter consent full disclosure increasing patient power just the facts please patient consent patients time has come Transparency Source Type: news
Just the Facts Please: What You Don’t Know Could Harm You!
This article is based on one chapter of my book, The Patients’ Time Has Come (Canada: Med-Aware Publications, 2016).
[2] Rankin, The Patients’ Time Has Come, 122.
[3] Side-Effects: Connect™ is an educational tool designed by Elizabeth Rankin. By class of drug, the tool assists professionals and patients understand the relationship between their prescribed medication and the symptoms they could present with for which they may or may not have been given a diagnosis or recognize their side-effects.
[4] The Patients’ Time Has Come outlines what’s needed and proposed to provide consent to treatment documents that are ...
Source: Society for Participatory Medicine - July 14, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Newsletter consent full disclosure increasing patient power just the facts please patient consent patients time has come Transparency Source Type: news
Coalition for Compassionate Care of California Summit Summary
I first met SPM-er and palliative physician, Dr Michael Fratkin on twitter. Michael’s re-imagined end of life caring through video conferencing is amazing unto itself, but more importantly what resonated for me are his insights into dying not as a medical dilemma but as a human experience. Here’s his TEDx talk to learn more.
I met Michael in real life at the Coalition for Compassionate Care of California Summit, where I was an invited ePatient. Humor and light-heartedness have their place in this emotional arena.
At the Summit, I took the opportunity to remind a roomful of folks dedicated to a dignified ‘end’ that ...
Source: Society for Participatory Medicine - July 14, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Member Updates Newsletter Coalition for Compassionate Care of California Summit Dave deBronkart Karl steinberg life sustaining treatment pallative care pallative pet care physician orders POLST Source Type: news
July 2016 Editorial: Planning for the Best Possible End of Life
Participatory patients live with day-to-day ‘engagement’ but end-of-life is an oft-missed opportunity for participation that can result in more ‘control’ than any other time in life. End of life planning is also an opportunity for a deeper understanding of what makes life worth living.
My own participatory ‘aha’ came via a tweetchat for hospice and palliative healthcare professionals #hpm. As the only ‘layperson’ I realized how little I knew beyond DNR and CPR. I began learning from my virtual community, started blogging about what I learned, and created BestEndings.com.
The gifts that creating this websit...
Source: Society for Participatory Medicine - July 14, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Editorial Newsletter best endings end-of-life kathy kastner nursing home pallative care planning for the end Source Type: news
Learning by Doing: A Direction for Improving Doctor-Patient Collaboration
Is it possible that healthcare movement such as Patient Engagement and Person- and Family-Centered Care are actually failing?
Without a doubt, these movements have generated impressive progress. I am a parent of a medically complex child who would probably not be alive if not for the success of these movements. That success has allowed my wife and me — neither of us medical professionals — to put a hand on the wheel of our son’s care and steer toward more favorable outcomes. Quite reasonably, most people who believe in these movements seem to conclude based on their progress that they are on an inexorab...
Source: Society for Participatory Medicine - June 20, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Newsletter building capability e-patient movement e-patients family-centered care family-centered rounding learning by doing Patient engagement person centered care Source Type: news
June 2016 Editorial: From the Editor ’ s Desk
In one sense, the movement for Patient Engagement has been tremendously successful. Key elements like shared decision making, co-production of care, and patient data portals are almost ubiquitous. Clinicians increasingly seem to value patient engagement, healthcare executives are realizing its importance, and quite a bit of money is being spent on technology to support it. The movement for Person- and Family-Centered Care, a close cousin of the E-Patient movement, is a bandwagon with countless riders. These movements are even gaining various forms of legislative support.
In another sense, these movements are strugg...
Source: Society for Participatory Medicine - June 20, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Editorial Newsletter june editorial Patient Data Patient engagement shared decision making tyson ortiz Source Type: news
June 2016 Editorial: From the Editor’s Desk
In one sense, the movement for Patient Engagement has been tremendously successful. Key elements like shared decision making, co-production of care, and patient data portals are almost ubiquitous. Clinicians increasingly seem to value patient engagement, healthcare executives are realizing its importance, and quite a bit of money is being spent on technology to support it. The movement for Person- and Family-Centered Care, a close cousin of the E-Patient movement, is a bandwagon with countless riders. These movements are even gaining various forms of legislative support.
In another sense, these movements are strugg...
Source: Society for Participatory Medicine - June 20, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Editorial Newsletter june editorial Patient Data Patient engagement shared decision making tyson ortiz Source Type: news
Executive Committee Minutes, May 3, 2016
Participants:
Peter Elias, Nancy Finn, John Grohol, Danny Sands, Joe Ternullo, Jon Wald, Peggy Zuckerman
Minutes Approved
SPM at Health Datapooloza, Danny Sands
SPM will sponsor an informal get together at the 7th Annual Health Datapalooza Conference in Washington, D.C., May 8-11. A notice/invitation will be sent out to all members.
Curriculum Project, Patient Engagement, Peter Elias
Key topics for the curriculum posted on FreedCamp include:
Background and Definitions
Literacy
Psychology and Behavioral Economics
Information and Communication
Ethics
Technology and Tools
Peter Elias requested that individuals who have ide...
Source: Society for Participatory Medicine - May 18, 2016 Category: Journals (General) Authors: Nancy Finn Tags: Executive Minutes News Source Type: news
Patient Engagement Story: Imaging 3.0 Case Study: When the Radiologist Becomes the Patient
When she was a patient with cancer, Sabiha Raoof, MD, realized that patients experience many challenges throughout the course of diagnosis and treatment and started something new to better meet post-surgical patients’ needs. Soon thereafter, others in the hospital noticed and started asking if they could join her.
Summary: When Sabiha Raoof, MD, chairperson of the radiology departments at Jamaica Hospital Medical Center and Flushing Hospital Medical Center in Queens, NY, became a patient with breast cancer, she realized that patients experience many challenges throughout the course of diagnosis and treatment. After learn...
Source: Society for Participatory Medicine - May 10, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Newsletter doctor becomes a patient Patient engagement radiologist Sabiha Raoof Source Type: news
Interview with New Member, Mark Duman, MRPharmS
We chat with Mark Duman, MRPharmS, who is a T2D patient and MH carer, living happily in Manchester, England (despite being Scottish).
Mark’s background is in pharmacy but he specializes in:
Improving strategy and care pathways through better clinician & patient engagement
Promoting the use of high quality information for patients to encourage shared decision making with their clinicians
Harnessing technology to truly benefit patients, clinicians & managers.
http://participatorymedicine.org/wp-content/uploads/2016/04/MarkDumanInterview.mp3 (Source: Society for Participatory Medicine)
Source: Society for Participatory Medicine - May 10, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Interview Member Updates Newsletter Mark Duman new SPM member pharmacy Source Type: news
Introducing the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network
The Alzheimer’s and Dementia Patient/Caregiver-Powered Research Network (AD-PCPRN), funded by the Patient Centered Outcomes Research Institute (PCORI), aims to accelerate the development of effective treatments for Alzheimer’s disease and related dementias through the collaboration of scientists and family caregivers.
Suddenly, the trajectory of Alzheimer’s research has changed. The Patient Centered Outcomes Research Institute (PCORI) recently awarded a grant to fund the first Patient-Powered Research Network for Alzheimer’s disease and related dementias, the Alzheimer’s & Dementia Patient/Caregiver-Power...
Source: Society for Participatory Medicine - May 10, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Newsletter AD-PCPRN Alzheimer's dementia Patient Centered Outcomes Source Type: news
