A Caregiver’s Story Highlights the Need for Client-Centered Care
When faced with her husband’s deteriorating health (secondary progressive MS and kidney cancer), Holly found her voice to advocate for her husband’s wishes, so that he could participate in a meaningful family celebration.
My husband had Relapsing-Remitting Multiple Sclerosis (RRMS) that moved into secondary progressive MS. He eventually had only the partial use of one arm, requiring assistance with almost all daily activities. He was diagnosed with kidney cancer that had metastasized to his lungs, for which he had surgery and chemotherapy. These procedures weakened him and made swallowing even more difficult than...
Source: Society for Participatory Medicine - May 10, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Newsletter caregiver's story patient-centered Relapsing-Remitting Multiple Sclerosis Source Type: news
Executive Committee Minutes, April 19. 2016
Participants, Peter Elias, Nancy Finn John Grohol, John Hoben, Danny Sands Mark Reifsteck, Peggy Zuckerman
Minutes: Approved
Update of Strategic Initiatives
Membership Mark Reifsteck
Member Recruitment
The membership team is sending out a letter by May 1 to all members asking them to solicit one other person to become a member and stating the benefits of SPM membership. We discussed whether to create incentives to encourage members to bring in other new members and how we will track referrals from members who are successful in signing up new members, using a member referral form.
From the Linked In social network we have i...
Source: Society for Participatory Medicine - May 4, 2016 Category: Journals (General) Authors: Nancy Finn Tags: Executive Minutes News Source Type: news
Executive Committee Meeting April 5, 2016
Participants: Nick Dawson, Peter Elias, Nancy Finn, John Hoben, Sarah Krug, Mark Reisteck, Danny Sands, Jonathan Wald, Peggy Zuckerman
Review of Initiatives
ONC class on participatory medicine, Peter Elias.
This is an introductory lecture and part of a series that ONC will sponsor for people interested in Health IT and healthcare careers. Introduction to participatory Engagement, draft and slide deck will go out 4/6. SPM will receive recognition for preparing this course outline.
Internal Communications, John Hoben,
All of the tasks for internal communication have been put into a gant chart and several discussions ...
Source: Society for Participatory Medicine - April 20, 2016 Category: Journals (General) Authors: Nancy Finn Tags: Executive Minutes News Source Type: news
Board Minutes, March 22, 2016
Participants: Kyra Bobineck, Donna Cryer, Dave deBronkart Nancy Finn, Eric Glazer, John Grohol, John Hoben, Sarah Krug, Mark Reifsteck, Danny Sands, Joe Ternullo, Jon Wald,
Minutes Approved
2016 Key Initiatives
We discussed the purpose of our key initiatives and agreed that our focus should be on participatory medicine and specifically identifying and disseminating best practices in participatory medicine. Our Society needs to become the champion of best practices in participatory medicine.
Corporate fundraising
We discussed corporate fundraising prospects with no specific outcomes at this point.
Freedcamp
Freedcamp is the...
Source: Society for Participatory Medicine - April 20, 2016 Category: Journals (General) Authors: Nancy Finn Tags: Board Minutes News Source Type: news
Meniere’s Disease – A poem on Participatory Medicine
Meniere’s Disease, is that what you said?
Does it effect my whole body or just my head?
Will I always have this dizzy feel?
Where the room spins around and makes me reel?
And what about the ringing in my ear?
Or the fullness that comes and makes me not hear?
And Doctor, tell me, how can this be?
Is it just something that developed in me?
How long will it last? Does it go on and on?
What can I do? Is my normal life gone?
And what about as I grow older?
Will this disease become much bolder?
What if it happens when I decide to drive?
Can you guarantee I’ll make it home alive?
What about surger...
Source: Society for Participatory Medicine - April 10, 2016 Category: Journals (General) Authors: Society for Participatory Medicine Staff Tags: Member Updates Newsletter Meniere's Disease menieres participatory medicine poem Source Type: news
Video: Casey Quinlan on the BMC Medicine Article “Trustworthy Guidelines”
A fantastic video interview with SPM member Casey Quinlan conducted by John Hoben that discusses the op-ed in the journal, BMC Medicine entitled, Trustworthy guidelines – excellent; customized care tools – even better which she was a co-author on. From the article:
The ability to do online searches for health information has led to concerns that patients find the results confusing and that they often lead to expectations for treatments that have little supportive evidence. At the same time, the science of summarizing research evidence has advanced to the point where it is increasingly possible to quantify treat...
Source: Society for Participatory Medicine - April 10, 2016 Category: Journals (General) Authors: Society for Participatory Medicine Staff Tags: Member Updates Newsletter Video BMC article casey quinlan Source Type: news
Why Patients Weren’t Included at #HIMSS16 & Why They Will Be at #HIMSS17
Caveat: I in no way mean to imply that my actions are solely, or even substantially, reasons for change. But change is coming, and I’m part of it!
Before HIMSS 2016, I couldn’t shake the thought: where were patients at healthcare events — and why weren’t we doing more to include them?
Since a number of brilliant patient advocates (looking at you, Casey Quinlan,Dave de Bronkart, Jess Jacobs, Carly Medosch), opened my eyes to the issues plaguing patient representation at healthcare events, I started speaking up at every opportunity — conference steering committee meetings, with my own marketing team, across...
Source: Society for Participatory Medicine - April 10, 2016 Category: Journals (General) Authors: Society for Participatory Medicine Staff Tags: Editorial Newsletter e-patients Himss HIMSS16 HIMSS17 patients at conferences patients included patients not included Source Type: news
Overview of the Board Initiatives for 2016
It is an exciting time within the Society for Participatory Medicine (S4PM)! The New Year for the organization began with renewed energy for advancing the work of the Society, which in part is to bring engaged patients and engaged providers together in collaboration to further better, more effective care.
Under the leadership of Joe Ternullo, President-Elect, Donna Cryer, Co-Chairperson, Jon Wald, President and Danny Sands, Chairman; the S4PM board has adopted an aggressive set of initiatives to drive growth, relevance and sustainability of the Society. Each initiative has a board member committed to its completion ...
Source: Society for Participatory Medicine - April 10, 2016 Category: Journals (General) Authors: Society for Participatory Medicine Staff Tags: Editorial Newsletter board initiatives learning exchange Mark Reifsteck participatory medicine SPM communications Source Type: news
Executive Committee Minutes, March 8, 2016
Participants: Donna Cryer, Dave DeBronkart, Peter Elias, Nancy Finn, John Grohol, Sarah Krug, Danny Sands, Joe Ternullo, Jon Wald, Peggy Zuckerman
Minutes Approved
Strategic Initiatives
Eric Glazer proposed to work on External Communication along with Dave DeBronkart
Discussed the need for a project management tool and the Executive Committee approved a budget of up to $40 per month if needed.
Graphic Donna Cryer
A graphic was created to focus our discussion on our strategic initiative; demonstrate how everything interrelates and help us communicate. At the center is our focus on best practices in participatory medicine ...
Source: Society for Participatory Medicine - April 4, 2016 Category: Journals (General) Authors: Nancy Finn Tags: General Source Type: news
Executive Committee Minutes February 23, 2016
Participants: Nick Dawson, Dave DeBronkart, Peter Elias, Nancy Finn, John Grohol, Sarah Krug, Danny Sands, Joe Ternullo, Jon Wald, Peggy Zuckerman
Minutes Approved
Strategic Initiatives 2016
We reviewed the spreadsheet that outlines the areas of focus and team assignments to date. Danny has asked everyone to personally look over the spreadsheet and come back to the Executive Committee with additional suggestions for team members. The teams include:
Overall Project Managers: Nancy Finn, Mark Reifsteck, Tracy Zervakis
Team Assignments to date:
• External Communications – John Hoben, Jan Oldenburg
• Internal C...
Source: Society for Participatory Medicine - March 13, 2016 Category: Journals (General) Authors: Nancy Finn Tags: Executive Minutes News Source Type: news
Hangouts: Global Chat about Health & Health Care Literacy
A Global Conversation held on Hangouts discussing the state of Health and Health Care Literacy.
Peggy Zuckerman (CA, US), Geri Lynn Baumblat (Chicago, US), Dr. Mayank Agra (New Delhi, India), Dr. Ruslan Savitskij (Stockholm, Sweden) and Dr. Michael Mascia (ME, US) talk about the global need for and current status of health and health care literacy.
(Source: Society for Participatory Medicine)
Source: Society for Participatory Medicine - March 8, 2016 Category: Journals (General) Authors: Vanessa Carter Tags: Hangouts Newsletter Source Type: news
ePatient Interview: Brenda Dunn’s Story
Brenda Dunn’s story by Dr. Michael F. Mascia, MD, MPH
Michael: We are honored to have these words from BRENDA Dunn, one of our most experienced and helpful members. She is a wise and experienced mother, grandmother, patient and nurse who openly shares her knowledge and good humor with others in need. She learned much the hard way … as a patient, after a professional life dedicated to best care for and treatment of patients.
First, I think we need to know your story … Your history of work and all and anything you want to tell about the medical adventures and misadventures you have experienced. Tell...
Source: Society for Participatory Medicine - March 8, 2016 Category: Journals (General) Authors: Vanessa Carter Tags: Interview Newsletter Source Type: news
The IoT, Smart Prosthetics, Bioprinting & the Developing World
Matt Ratto of U of T’s iSchool with orthopaedic technologist Joyce Nakibirango at the CoRSU hospital in Uganda. Credit: ginger coons/Critical Making
Courtesy of Phys.org.
Once confined to the realm of science fiction, 3D printers have become part of the mainstream. These machines fabricate physical objects by melting and layering plastic through a nozzle. Users can create or download professionally designed plans and produce custom objects ranging from tree ornaments to prosthetic limbs.
No one understands the process better than U of T’s Matt Ratto. This associate professor at the iSchool and director of the S...
Source: Society for Participatory Medicine - March 8, 2016 Category: Journals (General) Authors: Vanessa Carter Tags: Learn Newsletter Source Type: news
The Internet of Things
The concepts behind the phrase “internet of things” (IoT) has been around for ten years among information and communication (ICT) professionals. Put very simply it is about assigning any tool, device, machine or building — things — a unique electronic identifier so that these can be connected to electronic networks such the Internet or the telephone system.
Being able to monitor air conditioning performance in a building from another location or from your smartphone is an example of how IoT may work. IoT has the potential to radically change health system productivity. All smartphones and tablets, f...
Source: Society for Participatory Medicine - March 8, 2016 Category: Journals (General) Authors: Mayank Agarwal Tags: Editorial Newsletter Source Type: news
Recommended Course: An Introduction to Global Health
This month’s recommended course to help beginners understanding global health and demographic diversity in the IoT.
Understanding challenges and solutions to global health issues from an inter-disciplinary perspective, this course available on www.edx.org
What you’ll learn
How the countries of the world changed from being developing or developed countries to now being a on a continuum of socio-economic level
How falling child mortality and fertility will end the fast growth of the world population in this century
How economic level, inequity and policy of nations determines the health of its citizens
How th...
Source: Society for Participatory Medicine - March 8, 2016 Category: Journals (General) Authors: Vanessa Carter Tags: Newsletter Recommended Video Source Type: news
