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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. Several years ago we had a BIG dust-up :-) on this subject on the e-patient blog:  https://participatorymedicine.org/epatients/2015/11/the-truth-about-the-your-googling-and-my-medical-degree-mug.html You'll find the NINETY-FIVE COMMENTS are full ...

  • Posted in: Open Forum

    Hello everyone, and thank you for this robust discussion!! This is an important NPRM to comment on for S4PM. It looks like the submissions are due in April - if anyone hears of a specific date please post here. We realize that with the HIPAA commentary ...

  • Posted in: Open Forum

    I'd like to play devil's advocate, here. Kirstan's mCharts web site says that patients can enter their health info into the mChart app either by downloading records directly from existing EHRs OR by sitting down and entering info manually.  I've signed ...

  • Posted in: Open Forum

    Missed it. Looking forward to the replay link. Danny van Leeuwen, Opa, RN, MPH Health Hats 617-304-4681 (c) https://www.health-hats.com/ (website) Health Hats Blog Health Hats, the Podcast @healthhats (Twitter) LinkedIn ...

    1 person likes this.
  • Posted in: Open Forum

    Rather than just complaining, let me suggest an improvement to the problem of information asymmetry modeled on how we deal with nutrition data. People have a hard time telling how a given food will affect their health in the long run, so we introduced ...

  • Posted in: Open Forum

    I'm just catching up on this thread.  The actual answer, @Brenda Denzler , is that there is no way to know who got your data.   FB is being totally disingenuous about this, with Congress and others.  In his testimony Zuck was asked how many data points ...

  • Posted in: Open Forum

    Fabulous talk, Jeanne!  Let the Transparency Happen!!  Everyone - share this one around today :-) ------------------------------ Susan Woods, MD, MPH SPM Past President @SueWoods suewoods50@gmail.com ------------------------------

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    PAtient Journal

    Posted in: Open Forum

    Here is a Patient Journal I came across. The copy was sent to me by the author. She did not approve the inclusion on this website bit she "does not oppose." ------------------------------ It's A Great Day To Be Alive Cathy Bandy Tampa Bay, Florida ...

  • Posted in: Open Forum

    Thank you for sharing this insight. ------------------------------ Beth Barnett, RN, BSN, PhD Lifetime Member Society for Participatory Medicine ------------------------------

  • Posted in: Open Forum

    Nice ~ 30 minute interview of Rob Lamberts by David Harlow, covering the EHR, direct primary care, and some thoughts about the future of medicine. Not much about llamas, though. (In joke for those who know Rob.) ------------------------------ The chief ...

  • Posted in: Open Forum

    Adults may act out, too. Not because they are refusing to BE adults, but because they are ensnared in the consequences an ACE(s) in their past. Brenda ------Original Message------ Aces- Adverse Childhood Events are obviously out of the child's ...

  • Posted in: Open Forum

    Thank you so much for your good wishes, on and off list, folks! Excited!! (we will have more big news soon, so stay tuned!) ------------------------------ jeanne pinder clearhealthcosts.com PELHAM 9144509499 ------------------------------

  • Posted in: Open Forum

    Hi all,  I ' m involved in a PCORI grant to improve shared decision making for chronic  kidney  disease. They are looking for more patients and family caregivers to participate in Chicago, Boston, San Diego, and Portland, ME. So if you know of anyone, ...

  • Posted in: Open Forum

    Have you done work in your community to increase health literacy? Share it -- the Institute for Healthcare Advancement (IHA) Health Literacy call for Posters is open! Also, will any other SPMers be attending this year? http://hlc.iha4health.org/call-for-posters-is-now-open/ ...

  • Posted in: Open Forum

    @Beth Barnett    As we were getting ready to launch our website, we had a legal review done.  My lawyer gave me this link.  https://www.hhs.gov/hipaa/for-professionals/privacy/index.html HHS.gov ...

  • Posted in: Open Forum

    Indeed. Classic example of behavioral economics positively used in practice. Maybe this is future learning series for SPM? Someone from penn health nudge unit http://nudgeunit.upenn.edu or similar? This new(ish) group also great for patients ...

  • Posted in: Open Forum

    I have an AHRQ-funded gig with the Patient-Centered Clinical Decision Support-Learning Network. I presented at their annual meeting in November. Here's a link to that presentation: This year I'm co-leading a group considering the patient-facing issues ...

  • Posted in: Open Forum

    @Adrian Gropper , nice, usable framework.  Very concise and a time saver.  Made the difference between being able to contribute a well thought and usable response and not.  Thank you for sharing. I believe that the comment period closes tomorrow.  This ...

  • Posted in: Open Forum

    This just landed in my inbox . #2, 3 and 4 are especially relevant to this discussion. ​ ------------------------------ Lynda Mitchell, MA, RHIA, CAE SPM Governance Committee Chair Doylestown PA https://twitter.com/LyndaGMitchell https://www.linkedin.com/in/lyndamitchell/ ...

    1 person likes this.
  • Posted in: Open Forum

    Thanks. ------------------------------ Shereese Maynard Salisbury MD 443-500-1422 ------------------------------

  • Posted in: Open Forum

    Not my favorite thing to seemingly self-promote, but thought this group would appreciate learning and knowing about these two things and might appreciate the potential to improve participatory medicine in this area of cardiac care (esp rehab). 1. Cardiac ...

  • Posted in: Open Forum

    Sorry for the tardiness of this response on publishing. In October, 2018 (OK: October is before November, but I'm not sure I mentioned it), I wrote in a public forum about an article behind a firewall, and done with colleagues, about evidence for DTC ...

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    SXSW Discount Code

    Posted in: Open Forum

    Hello SPM Members- Please find details of an exclusive discount for SPM Members to attend SXSW March 8-17 in Austin (courtesy of Fred Trotter)! Step 1: https://energizestaging.energizing.health/shop/ Buy a "discount code" ...

    1 person likes this.
  • Posted in: Open Forum

    Hi Brenda,  Thank you for your important volunteer work. You are correct that many decisions have been made before entering hospice care. The DNR process is very complex and applies to a specific institution (hospital, long term care, and so on). There ...

  • Posted in: Open Forum

    Ah, to clarify, here are the steps :-) Fill out the form (you just need to note your name; everything else is optional) Once you hit SUBMIT, you'll get a link to the Google Group. Join that group and you'll see a link to the rolodex, which ...

  • Posted in: Open Forum

    Lynda, I love that you want to work on this issue of what's board work and what's not!  (It's all volunteer, though, so we need a better differentiator than "board or volunteer.") A core existential issue for this society especially, IMO, is participation ...

  • Posted in: Open Forum

    Just got off the phone with the SPM Policy Committee, and at Vera Rulon's suggestion will offer some background on Federal privacy/data protection legislation in the hopper for 2019. Federal privacy legislation has the potential to have huge impact on ...

  • Posted in: Open Forum

    I didn't know for sure I was going to attend HIMSS until yesterday.   It will be my first time to attend and I'm very glad for the opportunity.  For ladies possibly needing last minute arrangements to attend HIMSS, please contact me as I have booked lovely ...

  • Posted in: Open Forum

    Woo hoo!  Here's the link for the finalized form: https://goo.gl/forms/MjQdXsVdhkFLOgYw2 ------------------------------ Adam Lasnik Google Mountain View CA ------------------------------

    1 person likes this.
  • Posted in: Open Forum

    ICYMI- this is the first SPM retreat I haven't been able to attend so I'm grateful for Burt's concise , clear and energetic first report of what happened and what's starting to come in follow-up. Got any thoughts? If you want to help with ...

  • Posted in: Open Forum

    Thanks Dave, very excited about our course and look forward to feedback https://youtu.be/7EStxWSLMNw ------------------------------ Amy Price Empower2 Go & BMJ & University of Oxford Delray Fl 954 471 6143 ------------------------------

  • Posted in: Open Forum

    Do you provide support for family caregivers or former family caregivers? Do you change the experience for family caregivers and former family caregivers for the better? If so, we'd love to honor you with our Second Annual Caregiving Visionary Award. ...

  • Posted in: Open Forum

    DUH! Found it - thanks, @Danny van Leeuwen ​​​​​ ------------------------------ Casey Quinlan Mighty Casey Media LLC | Host/Producer "Healthcare Is HILAROUS!" podcast Richmond VA 804-467-5716 ------------------------------

  • Posted in: Open Forum

    If you are ever in need of patients to review documents you are working on please let me know. I have access to several large groups consisting of patients with cardiac, tbi, chronic pain, and immune disorders (FMSms, CFS/ME). Im usual able to rouse up ...

  • Posted in: Open Forum

    A recent post by Dr. Hans Duvevelt about the McDonaldization of health care refered back to an older post about replacing 'treatment' with 'guidance' in the sense of 'diagnosis and guidance' being the core of primary care. Both columns are worth ...

  • Posted in: Open Forum

    The Feb #patientengagement blog is up! This month with Health Education Specailist: Hannah Herrington   http://bit.ly/PEblogFeb19 Patient-experience Extending Time With Patients: No Time Travel Needed ...

  • Posted in: Open Forum

    Peter, I look forward to reading your comment when it gets through moderation. The Checklist article reminded me of another article I read yesterday & hadn't shared yet. It's in Harvard Business Review (registration gives you access to 3 free articles/month):  ...

  • Posted in: Open Forum

    http://hlc.iha4health.org/call-for-award-nominations/ IHA Health Literacy Conference Nominate Someone for an IHA Health Literacy Award Submit a Nomination IHA's Annual Health Literacy Awards Each year, the ...

  • Posted in: Open Forum

    Congratulations, @Sara Riggare ! Speaking of exemplary women in Sweden, are you familiar with the work of Swedish physician ​Catharina Svanborg, M.D.?  See  this discussion for background in her work.  Thanks, Sara! ------------------------------ ...

  • Posted in: Open Forum

    Thanks, Peter - yes, I know that multi-tasking hasty hurried spell all too well :-)  ------------------------------ John Hoben Lifetime Member Society for Participatory Medicine (SPM) https://www.linkedin.com/in/johnhoben hoben.john@gmail.com +1 585 ...

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