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It will be interesting to see if/how institutions apply this. ------------------------------ Every good deed is worth doing. Peter Elias Lifetime member Prior Member-at-large of the SPM Board Retired Family Physician Family Physician Auburn ME 207 576-0716 ...

Thank you @John Novack and @Beth Barnett  I appreciate your comments and article on the importance of Patients included in conferences. At UW ITHS FHIR conference held Friday and Saturday, I learned quite a bit about APIs (4.20 = 611 APIs 23% FHIR ...

@Adrian Gropper , I recently started working at an advocacy company called https://www.northshorern.com/ . We are in Chicago area but my boss has networks of people she knows if you need a referral in other areas. We do help out on issues like you have ...

Hi Catherine, I understand well your concern and I hope your mother gets better soon. This may sound like self promotion but helping with communications to family and caregivers was the central idea in developing our platform. We hope applications like ...

Hi Beth, In the past, thy've mainly included patients on some of their panels, but it's definitely more of an academic/research event. At this point, the date has passed to submit panel proposals, etc. Since they only added the patient advocate rate when ...

Dear SPM colleagues, How are you?  I hope you are keeping safe and well in these extraordinary times.  I am writing because I need your help. When I first joined SPM circa 2014, I was still in the middle of intensive treatments at Stanford ...

Thank you for sharing.  This is an area of great interest for me. ------------------------------ VictoriaFerro ria.ferro@gmail.com ------------------------------

Hi, fellow spmers! I have an important initiative I am promoting and looking for help. 9/17 is World Patient Safety Day and I am looking for influencers who can light up their buildings in orange. Full guideline is here: https://patientsafetymovement.org/unite-for-safe-care/take-action/support-uniteforsafecare/ ...

The Federal Trade Commission and state AGs enforce commercial speech, including mis-labeling. The standard is key because if someone says 5 g of Sugar and it's really 15, then the breach is clear. You don't need to go to a court. Apartment Lease contracts ...

Sorry, Marilyn - I don't know how that happened!  I fixed it, and here's the link for you. https://www.caringbridge.org/visit/davedebronkart/journal/view/id/5f4828bb1a8cec000156691b ------------------------------ Dave deBronkart e-Patient Dave LLC SPM ...

@Susan Woods ​ and everyone involved with the JoPM, a big congratulations! PubMed, PubMed Central and Scopus is a huge win for the journal and for S4PM (echoing previous comments, and speaking as a board member of a collection of medical journals). ...

I am working with Dr. Lakshman Swamy, (pulmonary and critical care) on a project that helps people understand the inner-workings of an intensive care unit.   It is actually a card game with medical terms "translated" into language that is understandable ...

The Society for Participatory Medicine has added its voice to a letter endorsing a House bill seeking more research on some of the most critical health system issues raised by COVID-19. Of particular interest to our community is expanding telehealth and ...

hi michael, if you look at the last page of the guidelines in the link i shared you'll see it was a collaboration of about 30 orgs, whether any hospitals are looking at them or utilizing them is a different question, my limited experience when our ...

These were wonderful articles, Brenda. I Tweeted the one about cancer as a “chronic” condition with the recommendation that it be framed in oncologists’ offices and copies handed out to patients. Thanks for sharing. Michael Millenson President, Health ...

Due to a delay, I believe hospitals can still sign up for the Sept 1 cohort of AHRQ's Improving Surgical Care and Recovery program. I loved working on this to create resources to help people prep for and recover better after ortho, gyn, colorectal and ...

Please respond directly to Laura Lovett at her email address, Laura.Lovett@himss.org Dear Participatory Medicine Society, I'm an editor at MobiHealthNews. I'm working on a feature story about what it's like to live with a rare ...

Here's a short article about some research into the use of comics for health education and communication. Here is a pdf of the research . Here is the conclusion of their paper: Comics have a long history of use in consumer health education and ...

@Susan Woods , @Deb Gordon , @Kate Lorig , ​​​​​​ @Janice McCallum , @Helene Clayton-Jeter, OD , Thank you for an excellent membership survey. The instrument was well designed, and I especially appreciate the detailed reporting of the member comments.  ...

Reading Danielle Ofri's new book, *When We Do Harm*. Just finished the chapter really highlighting the pluses and minuses of EHRs. It occurs to me that the deficits inherent (apparently) in the use of EHRs could be seriously mitigated by an informed and ...

" And for the first time the public really feel like their autonomy is gone and health behaviors are being dictated. " I'm also an observer on the sidelines of this tragic circus. Not sure that "the public" feels anything though, because the idea of ...

We hope you can join us on Tuesday, August 11 for HealthSparq's first-ever #WTFix Virtual Patient Panel! We'll be joined by a diverse group of panelists who will give honest feedback based on their experiences with health plans, health care providers, ...

FWIW, I find the conversations with and among patients far more interesting and useful than the conversations among professionals. Peter

I know a little bit about being a doctor and a little bit about AI. I have no idea how any patient is going to draw a line or tell the difference between the two in the near future. The analogy about your pilot and their instruments makes my point. ...

Geri Thank you for sharing this. I had received emails about the conference though had not acted on registering until I read this post. Thank you for the reminder! Sincerely ------------------------------ Janice Tufte Patient Partner @Hassanah2017 ...

Thank you @Beth Barnett ​ The paper you so kindly critiqued actually took years to finish. We we felt now was the right time to publish this. It is pretty dense in content that could be a challenge to some. Hopefully it might catalyze some organizations ...

Hi Jay, Very excited that you want to use the manifesto in a classroom setting! As you may know the manifesto was co-created at our fall 2018 conference so has the input of many people. Burt and I are happy to help you out in any way we can. Best, Judy ...

The next PATH (Patient Advocates Transforming Care) Tuesday Table Talk is back next week on July 14th, 2pm-2:30pm EST. Join for a discussion on community partnerships, #healthequity , and family engagement. Hala Durrah will be joined by ...

Hello SPM - does anyone know what the process is to appeal an OCR decision? Are there OCR judges or other administrative body to hear appeals?

Checking the Compass of Participatory Medicine To paraphrase Abraham Lincoln, "A compass will point you to true north, but it doesn't show you the swamps. If you get bogged down, what's the use of knowing the direction?" When on a journey, it's a good ...

While reading Head First, The Biology of Hope (1989), by Norman Cousins, I came to the quote inserted below. Intriguing to me. Cousins backs his statement with lots of anecdotal evidence, which I personally find convincing. I wonder if SPM members can ...

Hi Susan!! It is so fun to meet another OT on here!! I will connect with Burt, then circle back to you with what I learn! I think the manifesto could be such an incredible tool for kicking off OT sessions! ------------------------------ Sarah Lyon OT ...

COVID19 Interconnectedness: Health Inequity, the Climate Crisis, and Collective Trauma. Marlene F. Watson Gonzalo Bacigalupe Manijeh Daneshpour ...

Very good article! Brenda

Hi everyone,  The deadline for the patient scholarships is tomorrow. This will be a virtual conference.  From the website:  The AcademyHealth Annual Research Meeting (ARM) supports a healthy exchange of big ideas from a wide variety of voices. This ...

FYI - the next #PATH Patient Advocates Transforming Healthcare TuesdayTableTalk is tomorrow:  6/23 from 2-230pm EST. This wee:The Great Reopening- How Patients/Caregivers Feel. Join Hala Durrah , Shari Berman & Charisse (Nikki) Montgomery, ...

I moderate a group on FB for people with medical PTSD, like myself. (We get about 1 new person per week.) One of our members is having some serious trouble finding a doctor who will work with her on a urological issue, so I told her that, with her permission, ...

I had to chuckle yesterday.  Went for a routine test. Technologist identified herself as a student and asked me if it would be alright if she got some pictures first and then the actual technologist would be in. Of course i said yes. Low-risk setting. ...

@Victoria Ferro I can understand your frustration. I should point out that the resistance of the healthcare system to change, particularly in response to outside forces, is legendary. For this reason when we founded the SPM we wanted to entrain the voices ...

This is a great week, it seems, for Members publishing their papers! In addition to Ken Master's publication --  Kudos to  @Deb Gordon and her co-authors for a new paper today in Journal of Participatory Medicine/JMIR Health Care Consumer Shopping ...