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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

    Yes, Kate. I agree. Actually, education is usually a weak intervention. Especially if you don't fix the underlying system issues Danny van Leeuwen, Opa, RN, MPH Health Hats 617-304-4681 (c) https://www.health-hats.com/ (website) ...

  • Posted in: Open Forum

    If you know of patients in the Los Angeles area who would be interested in attending the 2019 International Pain Summit at UCLA this November, please pass this link along. https://docs.google.com/forms/d/e/1FAIpQLScu3afQPxyVacoM7wM1dXp7srOAChNrl8xybrPZY6rurStmWw/viewform ...

  • Posted in: Open Forum

    I found this quote of interest: "A separate study in the Journal of Clinical Oncology showed that a majority of patients with thyroid cancer felt they did not have a choice about RAI treatment, particularly when their physicians were perceived as ...

  • Posted in: Open Forum

    It was great to connect with so many good folks last night at INSITUM. Thanks to Geri and all the volunteers, Rick and INSITUM for creating an open space for sharing information and connections. Good stuff! Mark VanderKlipp Founding Partner, ...

  • Posted in: Open Forum

    Patient-Centered CDS Learning Network 2019 Annual Meeting Registration is OPEN The 2019 Patient Centered Clinical Decision Support Learning Network Annual Meeting, Optimizing Health through Patient-facing Clinical Decision Support, will be held ...

  • Posted in: Open Forum

    A big start-up grant from the Robert Wood Johnson Foundation, which would mean specific goals/activities for our group. Brenda ------Original Message------ Updating next day - I deleted (strikethrough) my statement that SIDM was started by Hopkins. ...

  • Posted in: Open Forum

    OK. Thoughts on Project LEAD: 1. Their use of Ph.D. and M.D. researchers as the teachers was important. First, because these folks didn't just "know" the material well enough to teach it, but really used their knowledge on a daily basis in their ...

  • Posted in: Open Forum

    Thanks Dave. The more we look under this rock, the more we see of the coming debate over what actually is Medicare for All and the political posturing from everyone interested in continuing to waste Trillions on healthcare while also continuing disparities ...

  • Posted in: Open Forum

    I just posted (in the Membership Connect Community) an update on the work being done by the Membership Group, in the event that any SPM members would like to follow or help with this effort. ------------------------------ The chief cause of problems ...

  • Posted in: Open Forum

    Thank you for sharing this, Peter! OpenNotes is having some breakthroughs month by month. It is an exciting space to be in! ------------------------------ Liz Salmi Patient Senior Strategist, Outreach & Communication, OpenNotes Project Lead, Brain ...

  • Posted in: Open Forum

    Thank you I have sent out two recent webinars where I presented. Thank you Janice Tufte Sent from Yahoo Mail on Android ------Original Message------ Your points highlighted my main focuses, Lynda! Connect is a great resource for thought ...

  • Posted in: Open Forum

    What she (Casey) just said below... a big #me too (but keep reading anway) >> In short, unless we - as a membership, not just the BoD - can come up with ways to fund the work, we'll just keep having these same conversations. In the almost-decade ...

  • Posted in: Open Forum

    Encouraging Questions: The July #patientengagement blog is up! Thanks to AHRQ's Cindy Brach for co-authoring on their free resource to help patients ask questions http://bit.ly/JulyPEblog Patient-experience ...

  • Posted in: Open Forum

    Hi Peter - here's the brief blog on their app. I wasn't able to get data on utilization to date:  Encouraging Questions: The July #patientengagement blog is up: Encouraging Questions  http://bit.ly/JulyPEblog Patient-experience ...

  • Posted in: Open Forum

    Robert, that is exactly what I did. I had to learn the doctors' language AND their worldview, because the language was foreign to me, and the worldview.... Well, if I'd been trying to live among Martians, it couldn't have been stranger to me. The ...

  • Posted in: Open Forum

    @Amber Soucy, MSN RN does all the social media and @Judith Danielson does all the marketing ​​ ------------------------------ Burt Rosen Portland OR 2034709948 ------------------------------

  • Posted in: Open Forum

    This was posted by @Kate Lorig in another thread a few moments ago and deserves its own thread. Here is a website for all the evidence based health programs that are usually offered free or at low cost all over the country http://www.eblcprograms.org/evidence-based/map-of-programs/ ...

  • Posted in: Open Forum

    Thank you for posting the survey for the National IT PFAC seeking input for the perfect patient portal. Any and all of the input will help to frame to synthesize ideas and hoped for portal opportunities for the PFAC to develop out a prioritization list ...

    1 person likes this.
  • Posted in: Open Forum

    After a good but nevertheless slightly frustrating meeting with my 2 nd opinion onc doc yesterday, I came away able to articulate something that bothers me: As far as I know, Chinese medicine responds to changes in physiological function at an earlier ...

  • Posted in: Open Forum

    Thank you, Sue. For a volunteer organization, the amount of energy and involvement across the membership is breathtaking! - Joe ------Original Message------ Hello Friends, This is a milestone year for SPM - a decade old. ...

  • Posted in: Open Forum

    Returning to a comment I posted a while back about structures and processes. I came across this aside in The Great Influenza , by John M. Barry: "Institutions are a strange mix of the mass and the individual. They abstract. They behave according to ...

  • Profile Picture

    RE: SPM Manifesto

    Posted in: Open Forum

    thank you all for the comments, input and support! I am going to incorporate the feedback and get it to a writer with @Judith Danielson and hopefully turn it into something that represents us well. In terms of pledge vs manifesto, it might make sense ...

  • Posted in: Open Forum

    All, I wanted to remind you that as we shape this year's conference, we want to hear from you. Please join our standing weekly 1/2 hour SPM conference planning touchpoint call this coming Monday at 5:30 Eastern. Dial in is 781-202-6465 - no pin ...

  • Profile Picture

    RE: SPM's journal

    Posted in: Open Forum

    Brenda - please despair not. Sorry for the stress interacting with JoPM. The "journal" has 2 parts. One is the Editorial Board. This group of individuals - all SPM members & passionate PM advocates - help get papers reviewed. Papers go out to reviewers ...

  • Posted in: Open Forum

    If we speak loud and clear we just might get to a patient-centered longitudinal health record. The regulators, the doctors, and the service providers need to hear from you. Please consider adding your voice in this rather public forum: https://thehealthcareblog.com/blog/2019/06/20/remembering-the-real-stakeholders-patient-privacy-rights-comments-to-tefca-draft-2%ef%bb%bf/ ...

  • Posted in: Open Forum

    @Beth Barnett I agree with you and I would say that was the reason why I have joined spm.  I feel providing a safe environment for patients to participate is what I advocate for, in a concise statement, regardless of whether patients can speak for themselves ...

  • Posted in: Open Forum

    Here's a very thorough review of CCD access across the land. https://medinform.jmir.org/2019/2/e12348/ Don't be confused by the research focus of the paper. It applies to patient access for clinical purposes just as much. CCDs are good ...

  • Posted in: Open Forum

    Hello Friends, As we shape this year's conference, we want to hear from you. Please join our standing weekly 1/2 hour SPM conference planning touchpoint call this coming Monday at 5:30 Eastern. Dial in is 781-202-6465 - no pin needed. We want ...

  • Posted in: Open Forum

    This is quite a roller coaster ride.   Stuart Schreiber, co-founder of the Broad Institute of Harvard & MIT, relates his odyssey of tracking down his family's secrets.  Not for the faint of heart - but, ultimately, an inspiring Father's Day story (a US ...

  • Posted in: Open Forum

    Indeed. I highly recommend this book! Not just about healthcare... -- J Greg Merritt, PHD CEO/Founder PatientisPartner Patient Advocate Cell: 734 323 3455 Patients contain pearls of wisdom waiting to be tapped to solve your most thorny problems ...

  • Posted in: Open Forum

    You have an interesting problem with persistent "runner's" leg pain, Gangadhar. When you said, this time, that the pain is there at even a low level all the time, it made me remember something I've been noticing about myself. I'm not getting that ...

  • Posted in: Open Forum

    Good contribution, Brenda.  Passing responses: > I'm highly skeptical that all human states of ill health can be translated into algorithms  Time will tell ... perhaps more important, though, is the hope that AI can do a  lot  of the  trickier  parts ...

  • Posted in: Open Forum

    I endorse this - I won't make it this year, but it's DEFINITELY a worthwhile conference. The sessions are very high value. Casey Quinlan (she/her) the "Mighty Mouth" Mighty Casey Media Cancer for Christmas Twitter ...

  • Posted in: Open Forum

    No, there was absolutely nothing informed-consent-like in either the recruitment email (which is where, as a researcher, I generally put all the informed consent language) OR in the survey -- which is exactly what made me nervous.  The advocacy organization ...

  • Posted in: Open Forum

    Agreed, Grace. Records ARE a mess, and making them electronic and interoperable/interchangeable among systems only spreads the mess. (On the opposite end of the "problem" spectrum, there's the way that corrections made to a record - for instance, medication ...

  • Posted in: Open Forum

    Thanks for the offer, Grace!  We have some members in the Philly area, and for those farther away, we have the SPM Member Patient Travel Scholarships program - a stipend of up to $599 to support your travel to relevant events. Apply here . ------------------------------ ...

  • Posted in: Open Forum

    As a member of the 'vocal minority' who have been speaking up, here's my personal perspective. I can't speak for others. I joined SPM in May of 2010 because it was a way for me - as a member - to get help with real time issues trying to do collaborative ...

    1 person likes this.
  • Posted in: Open Forum

    It will be difficult to have time at the July meeting, and a lot of new people have already registered for the next meetup - I'd suggest reaching out to people on the SPM Chicago email list and see if a working group can be created. -gl ------------------------------ ...

  • Posted in: Open Forum

    There's no place like home - but it's not always an easy transition or a good experience. What's one of the best ways to help people stay at home and reduce readmits? Occupational Therapy. Thanks to Daniel Ansel for co-authoring the June  #patientengagement ...

  • Posted in: Open Forum

    The Spring/Summer edition of consumer checkbook  (Washington DC edition) gives evidence of the extent to which participatory medicine has permeated the landscape.  Consumer Checkbook rates services in local jurisdictions and provides independent ratings ...

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