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The Society for Participatory Medicine's (SPM) online community is here for its members, to enhance collaboration and to allow members to share with one another in their own personal journey of participatory medicine. 

Some forums and discussions are visible for non-members to see, but participation in the discussion (and most of the content) is reserved for SPM members. If you click on a post or topic and get a login screen, it means that post or topic is only available SPM members. (If you are a member and see this screen, it means you are not logged in.)

We hope you will look around, like what you see, and become a member of the Society for Participatory Medicine. Not a member? Join us today!

Latest Discussions

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    @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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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) ...

  • Posted in: Open Forum

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

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    @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/ ...

  • Posted in: Open Forum

    @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 ...

  • Posted in: Open Forum

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

  • Posted in: Open Forum

    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 ...

  • Profile Picture

    RE: Compassion

    Posted in: Open Forum

    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. ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

    1 person likes this.
  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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, ...

  • Posted in: Open Forum

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

  • Posted in: Open Forum

    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

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 - ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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, ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Profile Picture

    RE: Show. Your. Work.

    Posted in: Open Forum

    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 ...

  • Posted in: Open Forum

    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 ...

  • Profile Picture

    More censorship!!

    Posted in: Open Forum

    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 ...

    1 person likes this.
  • Posted in: Open Forum

    @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.  ...

  • Posted in: Open Forum

    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 ...

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The Society for Participatory Medicine (SPM) is a community dedicated to helping patients, caregivers, and health professionals work collaboratively to meet the patient's health needs, as defined by the patient. You are visiting a tool we use for communication and collaboration within our community. This list of recent posts in our Open Forum provides a flavor of the wide variety of topics and projects of importance to members of our SPM community. There is much more available to members of the Society.

 

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