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These forums and libraries are the platforms SPM uses to communicate, collaborate, and share information about participatory medicine. A small portion of our work is 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 are available only to members. We hope you will look around, like what you see, and become a  member of the Society for Participatory Medicine. Visit our main website to join

Latest Discussions

  • Posted in: Open Forum

    As some of you know, I'm on the faculty at Harvard Medical School. They are offering an online course  on Shared Decision Making. It's aimed at clinicians, but others may also find it interest. Questions should be sent to Elizabeth Bennert , associate ...

  • Posted in: Open Forum

    I'm very excited to congratulate our newly elected members-at-large, @Kathy Duckett and @Brian Eastwood ! They will be terrific additions to the board. Their bios are on the SPM board page  here . Their role is to serve as a liaison between the members ...

  • Posted in: Open Forum

    Good stuff, @Susan Woods - thanks for sharing.  What do Rachel Grob and the other authors know about http://PatientWisdom.com and its numerous very successful implementations, especially at Froedert, @Gregory Makoul ?  ​ ------------------------------ ...

  • Posted in: Open Forum

    ------------------------------ Geri Lynn Baumblatt, MA Patient Engagement, Health Literacy, Shared Decision Making, Family Caregiver at Large in the Multiverse Chicago, IL gerilynn@mac.com | @GeriLynn ------------------------------

  • Posted in: Open Forum

    OK. I guess it's this statement that made me think you were advocating a more doctor-centered approach: " The doctor prescribes the right information to the patient depending on where they are in the "hierarchy" and their condition/disease." ...

  • Posted in: Open Forum

    I am currently updating our book, Living a Healthy Life with Chronic Conditions and need a urologist or other expert to read over, bless, or change a few paragraphs I have written on urinary incontinence. You can write me directly kate@selfmanagemen ...

  • Posted in: Open Forum

    My favorite ENT (the only one I know in real life) is the kiwi ​ @David Grayson , aka @Sasanof on Twitter. And you BET he's woke! Totally totally one of us! ​ ------------------------------ Dave deBronkart e-Patient Dave LLC SPM co-founder and past co-chair ...

  • Posted in: Open Forum

    Thanks for doing that extra research, Dave. I read the recent article on patient participation, but maybe the site had different URLs and I grabbed the wrong one. ------Original Message------ Great to see you, Andy! First, I had no IDEA there's ...

  • Posted in: Open Forum

    Propagate the info about the study on patient-centered platforms, such as Patients Like Me, FB disease-specific groups, etc. But I'm sure you've already thought of that one.   Can you drum up any media interest in the study and get free exposure that ...

  • Posted in: Open Forum

    I have renewed - and to avoid future embarrassing lapses I have renewed for life. Look forward to stepping up and engaging with the Society! ------------------------------ Brian Eastwood ReviveHealth Arlington MA Iambeastwood@gmail.com ------------- ...

    1 person likes this.
  • Posted in: Open Forum

    I have such mixed reactions to this video.  First, I'm glad it's honestly  infuriating  to me that anyone working in healthcare would need to have  any  of these things pointed out to them. I almost want to cuss.  But, on the other hand, anything that ...

  • Posted in: Open Forum

    Mass Health Quality Partners (MHQP) is hosting a webinar to introduce FAIR Health, an independent, nonprofit organization with a mission to improve understanding of healthcare costs and health coverage and to bring transparency to healthcare costs and ...

  • Posted in: Open Forum

    Anyone have first hand experience with this device? https://www.cnet.com/google-amp/news/omron-heartguide-my-life-with-a-blood-pressure-smartwatch/ CNET Omron HeartGuide: My life with a blood pressure smartwatch ...

  • Posted in: Open Forum

    Hi Brenda, At this point (treatments evolved over the years) I am just taking one medication daily as a preventive.  I do have a scan coming up next month so hopefully that's 4 years NED. Cheers, Victoria ------------------------------ Maria VictoriaFerro ...

  • Posted in: Open Forum

    I don't know if: 1. Connect would have enough information to pass to program; 2. Connect would allow you to embed a link to access outside program. Also I don't want to commit to a Connect-centric solution if we wind up changing platforms. ...

  • Posted in: Open Forum

    Another thought on this general subject - the need for a published *anything* kinda goes away in a case where every consumer / patient has wised up to the reality that nobody is perfect and all knowledge you ever learned is temporary anyway, so we all ...

  • Posted in: Open Forum

    This is a tip to a new resource that I found surprisingly well done.  The author team is open to our contributions. ___________ My long-time friend @Berci (Bertalan Mesko MD, PhD) ​creeps me out and inspires me. :-)  He inspires me for his extremely ...

  • Posted in: Open Forum

    [Admin note: this is a clone of a message in a special interest group  "Education, Tools & Resources."  To avoid getting the replies scattered, we're closing this thread - please reply in the SIG. Thanks for participating!] Hello SPM'ers, With the ...

  • Posted in: Open Forum

    SPM members, After serving on the board of directors and as Secretary of SPM since January 2018, I resigned from the position as of March 1. So, we are seeking someone to fill this position on the board. Here is a description of the role of the Secretary ...

  • Posted in: Open Forum

    Dear Talya,  Thank you for your thoughtful comments.  These training modules are being updated now. Consumers United Evidence asks who participates with them go through the training. Many other respected organizations do as well.  hhttps://training.cochrane.org/resource/understanding-evidence-based-healthcare-foundation-actionttps://training.cochrane.org/interactivelearning ...

  • Posted in: Open Forum

    Thank you Lydia I had forgotten to repost this amidst my many daily activities! I expect most of you have seen the latest Health Affairs magazine too: https://www.healthaffairs.org/toc/hlthaff/38/3 Have a good week all! Sincerely Janice Tufte ...

  • Posted in: Open Forum

    This is a useful article, but is cross-posted in two places. In order to avoid having two separate conversations. I will close this thread and discussions should occur here . ------------------------------ The chief cause of problems is solutions. ...

  • Posted in: Open Forum

    Please join me in congratulating fellow SPM member @Gregory Makoul for this great news last week with Allina Health:  ​ https://patientwisdom.com/press/allina-health-joins-forces-with-patientwisdom-inc-to-improve-patient-engagement Patientwisdom ...

    2 people like this.
  • Posted in: Open Forum

    This is a pointer to a post in the Education Community with a list of readings about diagnostic error. I will lock this thread so conversation about this happens in only once place. ------------------------------ The chief cause of problems is solutions. ...

  • Posted in: Open Forum

    ​Hi Janice. The board is currently considering a variety of options related to our conference strategy. A subgroup led by @Helene Clayton-Jeter, OD has taken this on and is developing recommendations. Options include doing conference as before (but ...

    1 person likes this.
  • Posted in: Open Forum

    I just posted (with a link) in the Education Community about a Patient Experience Library. This post is just a pointer - discussion of the library should take place in the Education Community . I will lock this post so we don't have two separate discussions ...

  • Posted in: Open Forum

    Sorry for the very delayed response to this thread.  After the very intense week at HIMSS + some Disney parks gallivanting, and the ensuing long travel back to northern CA, I had to deal with being under the weather with upper respiratory issues, which ...

  • Posted in: Open Forum

    My recall from having set up a FB integration with another community (not SPM) is that the person who chooses that option allows FB to share the data with the other organization (like SPM) but it's a one-way transmission, not a two way transmission. ...

  • Posted in: Open Forum

    [Admin note: somehow the original post had a number of glitches in it, including missing time zone and some system spewage. They've all been fixed, I think...] ------------------------------ Dave deBronkart e-Patient Dave LLC Nashua NH ------------- ...

  • Posted in: Open Forum

    http://bit.ly/MarPEblog Patient-experience More Than a Nuisance Addressing Post-op Depression: An Essential Part of Recovery & Participation Monday, March 04, 2019 Recently, a friend had ...

  • Posted in: Open Forum

    "In a multitude of counselors, there is wisdom." That's somewhere in the Proverbs.   Brenda ------------------------------ Brenda Denzler MedicalPTSD.com Pittsboro NC 919-418-0628 ------------------------------

  • Posted in: Open Forum

    I understand your point, Peter, about combining contributions. However, if the S4PM's offering to people on how to become a successful, empowered patient is going to be useful, it needs to be somewhat concise. To be confronted with all of these lists ...

  • Posted in: Open Forum

    @Janice McCallum  - >  see what you started with your post asking if anyone knew what Plan S was?! And appropriately so - knowledge really IS power, so putting it behind a paywall installs a limit on power. Yet, as we know, creating that knowledge does ...

  • Posted in: Open Forum

    To discuss this message, please hop over to this copy in Advocacy . ____________________ I'm primarily posting this in the Advocacy & Policy section, with a copy here in Open Forum so it gets noticed more. I'm posting it for rumination more than immediate ...

  • Posted in: Open Forum

    @Peter Elias , thanks indeed for those links.  The "Staggeringly different" piece links to an interactive comparison table  (sortable), which is fascinating - e.g. shoulder arthroscopy ranging $8,708 to $25,567 when the national average is $9,091! The ...

  • Posted in: Open Forum

    Hi @Dave deBronkart ! ONC regs being published Monday. We have 60 days to respond. Policy committee meeting Mon/Tues to agree on how to accomplish. We're on it! BTW - if anyone is interested in joining us please let me know. ------------------------------ ...

  • Posted in: Open Forum

    I am just so freaking THRILLED to see this level of discussion on such an important and relevant subject!  Thanks to Katherine for bringing it here and to all of you for your contributions! ------------------------------ Dave deBronkart e-Patient Dave ...

  • Posted in: Open Forum

    Thanks, Mark. Please give me a call. John ------------------------------ 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 ...

  • Posted in: Open Forum

    I'm posting this to both the Research & Evidence forum, and to Open Forum.  I'll close (lock) this copy on Open Forum version, so discussion can proceed in the Research & Evidence forum version . ___________ Background posts from the SPM blog: all ...

  • Posted in: Open Forum

    Wow, Dave. Just wow.... Makes me feel seriously overwhelmed and outnumbered, in the digital world. Brenda D. ------Original Message------ Brenda, I can't answer that with any certainty, but I'm VERY clear that there are limits to ...

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