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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

Jan 19: Chicago SPM Virtual January Meetup: Health Equity & Patient Safety Join Co-founders of Patients for Patient Safety US: @Soojin Jun & Marty Hatlie (also CEO of Project Patient Care) and Dr. Eunjeong Lee, president of the Asian American Resource ...

@John Grohol I am starting a new thread about volunteering for SPM -- following on the discussion that started in the Call for Action thread. Thank you for sharing the link to the Committees and Initiatives page. https://participatorymedicine.org/about/committees/ ...

@Janice Tufte Thank you for sharing this article. I think the RESPECT model is very well articulated. Co-design is so important for developing relevant and viable solutions.​ It is good to see a successful implementation of this model. I think this ...

@Brenda Denzler Thank you for sharing this survey. Beth​ ------------------------------ Beth Barnett, RN, BSN, PhD Lifetime Member Society for Participatory Medicine ------------------------------

Robert, you are too kind to me. :) Love you for that! However, by the time I finished my cancer treatments, I hated myself and wanted to die. When my mPTSD erupted right after my diagnosis (having been submerged more or less well for decades before ...

I'll add two other reasons that "very small acts of kindness can reap huge dividends."  Signalling. When others see a small act of kindness happening, it shows that it is possible and increases the ikelihood that others will follow the example. ...

On behalf of the Journal of Participatory Medicine (JoPM), the Society's journal, we extend warm wishes for the holiday and New Year. May it be joyous. After reading the post by @John Novack -  Linnea Olson: An Appreciation of a Giant   the founder ...

Aw, shucks, Robert! You can turn a girl’s head! LOL! As for being a “highly effective person,” I’ve always been tagged as more of an “anal-retentive” type, though that has certainly been waning as I’ve gotten older. Nice to think there’s another way to ...

Dear Beth, Thank you for your suggestion about board recruiting.  I'll take it back to the board as we aim to consistently improve processes.  I value your perspective.   Sincerely, Mary Hennings ------------------------------ mary hennings concord ma ...

Burt Rosen apparently found an insult in my comment about his polemic, that isn't there, and missed my recommendation that he exercise humility, which is. Given the tone and text of his messages, I have no desire to know know anything about him or to ...

A message for our members about HIMSS22. SPM is a HIMSS collaborator again this coming year. HIMSS22 is the can't-miss health information and technology event of the year, where professionals throughout the global health ecosystem connect for the education, ...

Thanks, Susan. Excellent paper from the always excellent Don Berwick. ------------------------------ Judy Danielson ------------------------------

Brenda and All SPMrs Here are listed on demand sessions available today from yesterdays sessions on the PCORI conference site, available after you register. "> https://janicetufte.com/ www.linkedin.com/in/janicetufte

Geri, you have no idea how it warms my heart to hear you say that. :) To some extent, I have internalized the message that I’m an undesirable, difficult patient and that I could and should be more pliant and grateful. So it does me good to see that someone ...

Sharing out this free webinar happening next week:  https://www.healthliteracysolutions.org/events/event-description?CalendarEventKey=1308bf95-a[…]a5-df4a1c54cbc9&Home=%2fevents-conferences%2fcalendar   ------------------------------ Geri Lynn ...

Not  long ago, CNN produced a documentary about the development of Covid-19 vaccines by the NIH and Moderna. The Cultural Programs of the National Academy of Sciences (CPNAS) hosted an online screening. The film highlighted the amazing work of NIH funded ...

Congratulations, Alexander - Godspeed to you and your success. -- ________________________________________________________________ John Hoben | hoben.john@gmail.com | +1 585 993 8265 office | +1 585 370 0847 mobile | John.hoben1 skype ...

Hi All You might be interested in attending one or more of the BMJ's Webinars on Patient access to their Health Records. https://linktr.ee/BMJPatient Regards Ken ------------------------------ Ken Masters Researcher / Academic SQU, Oman - ...

Hi Janice.  I will pass this on to the group working on assessing the conference.  I am sure they will appreciate your thoughts.  Looking at new geographies is one of the considerations.  That will depend on finding interested sponsors, in part.  I know ...

Dear Fellow Participatorians, I will be speaking at the upcoming Health AdvocateX conference on behalf of SPM. The theme of this year's virtual conference, to be held November 4-6, is "Health Advocacy Now: Lessons from the Pandemic." This organization, ...

This is an excellent example of what "could be" and one wonders how it has taken so long for a study like this to take hold...that is if it ever does other than in print. I don't know whether I mentioned I had occasion to give a presentation to Nursing ...

Hi All A gap between examiners' and patients' perceptions of effective communication is apparent Yes, I suspect that gap exists everywhere, because of the exam system, no matter how well-intended. The OSCE exam is a really good exam, because it allows ...

From Axios Vitals health newsfeed   " Advocates are fighting against the $14.5 billion health records industry, shaping what health-record software looks like - and who wins IT contracts. ( Insider )"  Link to an article that quotes Liz Salmi ...

https://www.eventbrite.com/e/chicago-participatory-med-meetup-conversational-agents-in-healthcare-tickets-190658503717 Eventbrite Chicago Participatory Med Meetup: Conversational Agents in Healthcare Eventbrite ...

Hi Susan > An intro discussion on JoPM/JMIR is scheduled for 10/6 at 1:30. I may have missed previous posts on this: could you please post the link and time-zone? Thanks ------------------------------ Ken Masters Researcher / Academic SQU, Oman ...

Randy,      I am not suggesting that rare diseases be a priority. Rather, that this funding opportunity could be used to create resources which could benefit the larger community. For example, if health literacy is an issue, creating training or resources ...

Hi Robert - let me check with @Josephshen and @RayWeadock as they may have someone in their networks.  John​ ------------------------------ John Hoben Lifetime Member Society for Participatory Medicine (SPM) https://www.linkedin.com/in/johnhoben hoben.john@gmail.com ...

Three page summary attached. ------------------------------ John Hoben Lifetime Member Society for Participatory Medicine (SPM) https://www.linkedin.com/in/johnhoben hoben.john@gmail.com +1 585 993 8265 office +1 585 370 0847 mobile / text john.hoben1 ...

Fair question. No guarantees, of course, but I think two things can help: CLEARLY label it as a work in progress or draft. Make sure that your organization has an agora where this is an understood cultural norm, so feedback is intended and received ...

Healthy skepticism is what has brought participatory medicine to the forefront of our advocacy for many of us. Brenda PCORI could certainly do more to advance patient centered care and outcomes and working with patients, families and caregivers at all ...

In one of my FB groups, someone mentioned that she had been bitten by a puppy. She was asking about how members of this group handled bites.  I wrote back to ask if the puppy had been vaccinated for rabies. My point being, if it hadn't, or if she didn't ...

@Janice Tufte I should have been clearer when I suggested the stipend. It was my idea to suggest the stipend and so everyone knows, I did not consult you before proposing it. It just occurred to me that this is the kind of work that SPM should support.  ...

I understand, John. And the rationale for not allowing comments on news article seems reasonable to me...though as you said, allowing one class of individuals to comment but not other classes is not kosher.  That said, I would point out that while some ...