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Working to create patient education for 20+ years, I couldn't agree more. Not only do people want more info - we often don't cover key questions and meet their informational needs about everything from post-op depression to impact on their sex life, etc. ...

Please find the link to the board agenda for the May meeting. Thanks, Mary https://drive.google.com/drive/folders/16vL_wF0LacGvYwckbrlVkqIlL9C6YyJ4 ------------------------------ mary hennings concord ma 978-369-2759 --------------------------- ...

Was this recorded for subsequent viewing? I was unable to attend due to a prior commitment. ------------------------------ Every good deed is worth doing. Peter Elias Lifetime member Prior Member-at-large of the SPM Board Retired Family Physician Family ...

Excellent op ed and question from Brenda.. ------------------------------ Rebecca Kirkland, MD Pittsboro NC ------------------------------

This article is not from my mPTSD group, but very well could have been. It's about trusting the medical profession, and how it too often lets patients down by blaming their symptoms on their "poor choices" rather than doing any serious investigation of ...

Honestly, there needs to be more cross-disciplinary training of ALL healthcare and mental health professionals. There's so much mutual knowledge that could be helpful to both sets of professionals that it's shameful that our academic institutions remain ...

Such a wonderful, important point about the power of brief, silent seconds of time. I have had the experience, and been part of it in many manifestations, extending the notion of 'silence' into withholding information from family members under the guise ...

Thanks, John! ------------------------------ Michael Metzler Michael Metzler Consulting, LLC Medfield MA 5082642818 ------------------------------

@Geri Baumblatt Thank you for posting. Beth​ ------------------------------ Beth Barnett, RN, BSN, PhD Lifetime Member Society for Participatory Medicine ------------------------------

These are great articles, Marilyn. I admire his own resilience! Brenda

Elizabeth, an oncologist who became a friend (an acquaintance through the autism community) told me several times that I was wrong to want to play a part in my own cancer treatment decisions. Wrong to expect to be anything more than a passenger on an ...

Medically necessary...a can of worms. First, medically necessary in order to do what ? Generally, people seem to frame this a necessary to provide care that improves the patient's well being. Second, who defines it? Most insurance companies have ...

You’re right, Janice. There are ethics that medical providers are sworn to uphold. And all too often medical PTSD is created by the failure of doctors and nurses and techs to honor their vows. However, the sad truth is that sometimes medical, treatment-related ...

Thank you @John Grohol , both for your perceptive comment and your years of solid contributions. I agree that there are many reasons people will come and go (or stay but change their activity level) in a volunteer organization. In my own case, I came ...

Forgot to add this - which may be helpful for commenting: https://www.takemedicineback.org/call-to-action ------------------------------ Geri Lynn Baumblatt, MA Pnicipal, Articulations Consulting Cofounder, Difference Collaborative @DiffCollab Family ...

@mary hennings Mary, Thank you for sharing this article. I acquired the article from the public library and it is attached. I strongly agree with the writer about changing the standard language used in medicine -- this is a great idea, and it ties in ...

Thank you for sharing this experience with us. The act of asking her and gaining her cooperation is so important. There are so many facets to engagement. Beth ------------------------------ Beth Barnett, RN, BSN, PhD Lifetime Member Society for Participatory ...

I remember that presentation, Beth! Thanks for the reminder. All the best, Michael ------------------------------ Michael Millenson Health Quality Advisors LLC Highland Park IL 312-952-1075 ------------------------------

I actually want to create two learning modules. One is for medical professionals. I think that's where the most urgent need lies, at this point in time. The other, later down the line, is a learning module for people with mPTSD--people who are terrified ...

Looks good. I registered but am not sure I will get back from the Bill Koch Ski Festival in time. ------------------------------ Every good deed is worth doing. Peter Elias Lifetime member Prior Member-at-large of the SPM Board Retired Family Physician ...

Marge, @Marge Benham-Hutchins Thank you for sharing this article from Health Executive. I was reading this article with the idea that there might be a confluence of agendas here - patients want their own health records to be accurate for improved treatment. ...

Passing this along from WEGO Health... Connect With Leading Patient Leaders This Rare Disease Day This Rare Disease Day, we're sitting down with top rare disease patient leaders, Jenica Leah, Meridith O' Connor, and Jessica ...

Correct. One cannot transform a file uploaded to a library in HigherLogic - or in most of the forum technologies I've used - into a discussion post. The two options generally are: Upload a file to a library or other document repository and then post ...

Thank you Beth I appreciate you taking the time to respond. Evidently other S4PMrs were not very interested. An interesting point or aftermath fall out about the Health Affairs 'Race and Health' virtual summit is that they are not allowed to promote ...

John I agree with how our systems are siloed, even integrated ​health care with embedded research systems can be. I have been having some serious issues crop up recently and just today one Dr wrote to me to ask if he could consult a Dr at Stanford regarding ...

@Bradford Power When I first read this post, Brad, I was wondering why you were focusing on the nexus of advocate and research partnerships. I work in the field of independent patient advocates, and some of my colleagues have great expertise in helping ...

Thank you so much Beth! It's really great to hear it rings true. Many people in my family are nurses, and I frequently see their siblings think - they're professional caregivers, this is no problem for them. And as someone from a medical family, ...

True enough, Robert. When I was in cancer treatment, I didn't know the difference between a 4th year medical student, an intern, a resident, a chief resident, a fellow, or an attending. And that's just one little, teeny tiny slice of the medical world ...

Stories resonate in a way that data alone doesn't. Hear Dr. Amy Waterman discuss how digital storytelling is being used to open up conversations about difficult decisions around topics like kidney transplant and donation. Free Registration: ...

Thanks, Bradford. I’ll keep this info handy as we develop our project and look for partners/outlets for it. Brenda

A recent conversation made me aware that many in our community do not know about our Connect community guidelines (and other useful information) available under the User's Guide drop down in the main menu at the top of the page. Here are our community ...

HAH - haven't been over here for eons (I don't do one-more-thing stuff beyond what I'm face down in on the daily for my work), got pinged that Peter had tagged me here. Discovered WheeLog while watching BBC World last night - only TV news I'll watch, ...

I am reaching out to you to see if you know of anyone that may be interested in serving on an NQF Risk Adjustment initiative that was launched last year. This effort involved creating technical guidance for social and functional risk adjustment for quality ...

Dear members: It's exciting to see how many members are eager to jump in and contribute to the participatory medicine movement. In order to grow the organization, and our outreach and impact, we need to raise the resources. I could really use the ...

I tend to agree with you, Beth. What I know from my health history is that on several occasions I’ve wound up being the zebra. Everyone wanted to hear horses’ hooves, but I kept thinking, “No. Zebra.” And I’ve been correct. I’m in the midst of such ...

@Peter Elias @Janice Tufte @Marge Benham-Hutchins @Beth Barnett ​​​​ @Danny Sands I will send out a Doodle poll to schedule an hour for us to chat about Connect and develop a proposal/plan ​ ------------------------------ Danny van Leeuwen ...

Thought the group might be interested in this article (and its associated article) about collaborative decision-making between advanced cancer patients and their oncologists. https://ascopubs.org/doi/full/10.1200/OP.21.00804?bid=136508684&cid=DM9549 ...

Yes, communication is tough in the best of circumstances. Just ask my wife. I will go ahead and schedule something. Love the opportunity to work with @Danny Sands . And @John Grohol Onward ​​​​ ------------------------------ Danny van Leeuwen Health ...

Dear SPM Members, Join the Society for Participatory Medicine (SPM) Mid-Atlantic and HealthScape LifeSciences LLC (HSLS) "Conscious Conversations" workshop on Zoom, February 1! Learn how to apply the principles of nonviolent communications (NVC) ...

Beth, right. That's what I thought the role of a patient advocate should be: informational and, perhaps, supportive. Not prescriptive. Brenda