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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

    I have a new article out. I wrote it when, one day, I found that I had something fundamentally in common with mice in a medical lab in a nearby state. All I could do to avoid their fate, the news release said, was live a "healthy lifestyle"...at least ...

  • Posted in: Open Forum

    Caveat: I'm hoping for discussion and perspectives and some personal 'this is how I do it, what works for you?' responses, and do not expect that we can decide on The Truth. Background: I've been a fierce advocate for patient autonomy since very early ...

  • Posted in: Open Forum

    By way of clarification, members can now navigate to the Board and ExeCom SIGs and read what is there, but cannot post in either community and cannot 'subscribe' and get email notifications of new posts in either community. Both posting and subscribing ...

  • Posted in: Open Forum

    Hi Adrian This is not a new discussion, but you're making it a false binary. HL7 can't "agree to honor the patient's designated destination for access as their the first priority" because HL7 has nothing to say about priority, only about what is possible. ...

  • Posted in: Open Forum

    We have about 500 members of SPM. This number includes some lifetime members who are no longer participants and some institutional memberships. Of that number, 334 (today - it fluctuates) have registered on Connect and can therefore read posts and post ...

  • Posted in: Open Forum

    Great idea to spread the word about the conference on facebook. Do you have stats on how many people did that? Can we send a similar message to people who have registered for the conference? How to alert on Linked In???  I don't use facebook.  I use ...

  • Posted in: Open Forum

    Danny vanLeeuwen @Danny van Leeuwen Questions about event Do I need to be a programmer to attend? Is this about the specific prototype to address medication management mentioned on the event website?  See copied text below. Is this Learning Network ...

  • Posted in: Open Forum

    Cathy,  I appreciate you posting this and sending to our emails also. When I have some set aside time I will browse through the graphics and tools you have provided.  Kindness goes along way.  Thank you! Sincerely  Janice Tufte  ------------------------------ ...

  • Posted in: Open Forum

    I'm going to agree with both the article and Peter.  I spend a lot of time reading what people think about the future of care, and at conferences, where I hear truly ignorant generalizations: "Patients do this," "Patients don't do that," "Patients don't ...

  • Posted in: Open Forum

    Peter @Peter Elias Thank you for sharing the James Corden video on the Bill Maher story about Fat Shaming. James Corden reminds us that there is a strong correlation between poverty and childhood obesity and that there is a known genetic component to ...

  • Posted in: Open Forum

    Thanks to @Dave deBronkart and Ryan for coming to the meeting! What a lively discussion we had!  I love your idea of streaming the meeting live!!  It was an honor to help organize.  I truly love coming to every meeting.  I am painting my own Regina ...

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    RE: Unblock Health

    Posted in: Open Forum

    Thanks, @Grace Cordovano - yes, that would be great. When works for you tomorrow as I am very flexible? ​ ------------------------------ John Hoben Lifetime Member Society for Participatory Medicine (SPM) https://www.linkedin.com/in/johnhoben hoben.john@gmail.com ...

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    RE: SPM "Manifesto"

    Posted in: Open Forum

    Thanks Sue.  Great input for the next iteration! ------------------------------ Burt Rosen Portland OR 2034709948 ------------------------------

  • Posted in: Open Forum

    In your posts in the original thread and in your emails to me you said...   "With Medicare, there are decisions you make at 65 and when you are healthy that cannot be reversed. With Medicare Advantage, once you opt to go into the Medicare Advantage and ...

  • Posted in: Open Forum

    Neil, Thank you for taking the time for sharing your story, and what a wonderfully courageous story it is. I totally agree about the value of information from AARP.  I rely on the AARP material on the Medicare rules, as well as the material published ...

  • Posted in: Open Forum

    Thought fellow SPM members might find this article of interest as shared in the health care [benefits] hackers list this morning:  https://prospect.org/article/private-equity-tries-protect-another-profit-center The American Prospect ...

  • Posted in: Open Forum
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  • Posted in: Open Forum

    John, @John Hoben Here is my input as a patient advocate and as an experienced care partner. 1. Area Agency on Aging. Every community has an area agency on aging that offers an information and referral service. If your relative lives in Spencerport, ...

  • Posted in: Open Forum

    Thanks to @Amber Soucy, MSN RN for creating this post, which is no​w live.  https://participatorymedicine.org/epatients/2019/09/call-to-action-second-annual-doc-tom-award-nominations-now-being-accepted.html Blog: Society for Participatory Medicine ...

    1 person likes this.
  • Profile Picture

    Utility of EMR

    Posted in: Open Forum

    I've previously mentioned Dr. Danielle Ofri in our discussions. She has just posted her thoughts about  Empathy in the Age of the EMR , and I think they are worth sharing in our Open Forum. When I reviewed other mentions of medical records in the Forum, ...

  • Posted in: Open Forum

    Hi Ken. Thanks for sharing this. It's a great opportunity to remind members how to add things to the SPM calendar , to which members can subscribe and also use another cool tool we have. In general, if you invite events@participatorymedicine.org on ...

  • Posted in: Open Forum

    I should confess that I did provide a physician with real-time, RWE about my physical state after she had run a stress test on me. When I got home, my condition declined as the minutes ticked by in ways that I could have predicted (based on experience), ...

  • Posted in: Open Forum

    Just to clarify, this is the Signature Initiative. It's is not meant to be strategic.  I hope you will all consider joining. ------------------------------ Danny Sands Board Co-chair Danny@ParticipatoryMedicine.org Danny@DrDannySands.com http://DrDannySands.com ...

  • Posted in: Open Forum

    Hello, all! Want to attend our 3rd Annual Conference this October?! Register today at  https://www.connectedhealthconf.org/boston/2019/register  for our Co-Located Event on October 15th and use the members-only discount code  CHC19SPMMEM at check-out ...

  • Posted in: Open Forum

    Yes, Grace - please tell us more. ------------------------------ 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 ...

  • Posted in: Open Forum

    All, I think we, as patients, are being taken for idiots in the name of patient safety. In the past week, there have been two articles in the NYTimes and THCB by our gatekeepers on this topic. I wrote about these in reply titled Barbarians at the Gate: ...

  • Posted in: Open Forum

    The September Patient Engagement  blog is up. Interesting free resource for expectant families: What About Mom?  Thanks to Teresa Wagner, DrPH   for co-authoring! http://bit.ly/SeptPEblog Patient-experience ...

  • Posted in: Open Forum

    Here's the material from the CMS notice. I believe Vera previously shared this part, on patient-generated health data, and the material on what "immediate" access to the EHR means. "...We are interested in ways that the Promoting Interoperability ...

  • Posted in: Open Forum

    Awesome! ------------------------------ Beth Barnett, RN, BSN, PhD Lifetime Member Society for Participatory Medicine ------------------------------

  • Posted in: Open Forum

    Great article. My sister sent me a link to the article when it was first published. We had a family member with breast cancer who fought for a stem cell transplant back in the early 90's , I do not think if it offered any benefit because she passed away ...

  • Posted in: Open Forum

    @Dave deBronkart Thank you for this post. As a moderately techie person, your post helps me to get the idea of the technology and the importance of action at this point in time. I was an observer of the creation of the HL7 standard (NIST had a ...

  • Posted in: Open Forum

    I'd like to add another option for affordable accommodations for the SPM conference. A friend of mine has a AirBnB 1 br that is within walking distance (about 30-40 min walk) or 10 min Uber/Lyft from the conference venue. It's in S. Boston in the Dorchester ...

  • Posted in: Open Forum

    Amy, Thank you for posting here. I have shared with a friend who might get back to you. ​ ------------------------------ Beth Barnett, RN, BSN, PhD Lifetime Member Society for Participatory Medicine ------------------------------

  • Posted in: Open Forum

    <cranky alert> @Marge Benham-Hutchins - you cannot find much information about the membership committee because there is not much public informaton available. There is cetainly no public posting about the group, its members, or how to participate. ...

  • Posted in: Open Forum

    Janice, Thanks for helping people to register for the conference. Here is the member registration code: CHC19SPMMEM Another tip: to register for SPM conference, you have to create a log in to HIMSS - because that organization is sponsoring Connected ...

  • Posted in: Open Forum

    Lots to unpack in that article.  First, I'm never sure what to make of writer Chrissy Farr - like many TV reporters trying to create a name for themselves (in my experience) she's sometimes been more of a promoter than a veteran; OTOH, she seems to be ...

  • Posted in: Open Forum

    I just stumbled across this, produced by two practicing physicians.  Haven't listened yet.  Anyone taste tested it yet?? https://www.npr.org/podcasts/510347/be-a-powerful-patient There's only one 2 minute intro and three episodes so far (all early ...

  • Posted in: Open Forum

    Thanks so much @Joseph Ternullo & @Beth Barnett and others for the info and help! I hope it can also be of help to others - why things in our heads are not part of basic healthcare coverage is its own problem. ------------------------------ Geri ...

  • Posted in: Open Forum

    This was such a helpful professional development course for me six years ago - if you are interested in #HCSM , #digitalstrategy , or building/maintaining #healthwebsites , please take this quick survey to inform future planning. Lisa ...

  • Posted in: Open Forum

    Wow, Cathy, that would be fantastic! Thank you! ------------------------------ Lynda Mitchell, MA, RHIA, CAE SPM Governance Committee Chair Independent Consultant - Nonprofit Management, Digital Health Communications Strategy, Patient Engagement in Research ...

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