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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

    @Beth Barnett  thank you much for that in-depth summary of a number of issues, particularly your wobbling expectations as a member.   @Burt Rosen and @Deb Gordon on the membership team, please note this useful discussion thread.  Lacking board-level ...

  • Posted in: Open Forum

    Thanks, Peter.  What's your takeaway?  Or are you intentionally leaving that unstated, to see what everyone else thinks? :-) As the length of this reply suggests, I can only conclude "it's complicated."  I hope the thought I put into this will be clarifying, ...

  • Posted in: Open Forum

    Hi all, I'm presenting at the Patient Advocacy meeting in Sept 10 on Cybersecurity. The topic is not my strength.  I realized that my presentation has a lot of crossover into medical error.  Are there any Cybersecurity experts (or the cyber curious) who ...

  • Posted in: Open Forum

    Patient Advisors Network is a Community?? of Practice for Canadian patients and caregivers. We have an ongoing survey in the field for patients and caregivers to fill out with answers to closed and open ended questions about their experiences and observations ...

  • Posted in: Open Forum

    I don't have a direct answer for you, Brenda - all I can say is that this is simply a report on which companies did and didn't respond correctly to Ciitizen's requests.  As always, time will tell ...​ ------------------------------ Dave deBronkart e-Patient ...

  • Posted in: Open Forum

    From our longtime member Sara in Stockholm- ---------- Forwarded message --------- Date: Thu, Aug 15, 2019 at 11:08 Subject: [BMJ Patient Panel] New paper on e-patients (I am a coauthor) Hi all, I am happy and proud to tell you all about that ...

  • Posted in: Open Forum

    The AMA is about to host an online discussion named Innovating to Address Social Determinants of Health . Here is a link to the registration page . It seems nicely aligned with the SPM mission. ------------------------------ Robert Becker Humaginarium ...

  • Posted in: Open Forum

    @Geri Baumblatt - awesome.​ ------------------------------ The chief cause of problems is solutions. Peter Elias Lifetime member Prior Member-at-large of the SPM Board Retired Family Physician Family Physician Auburn ME 207 576-0716 -------------- ...

  • Posted in: Open Forum

    John, I know Greg's work at Patient Wisdom reasonably well - it doesn't have anything to do with payment models (insurance or direct), does it?? ------Original Message------ Agreed, Peter. How familiar are you with fellow SPM member @Gregory ...

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

    Thank you so much for stepping up, @Amber Soucy, MSN RN !  I can't offer to lead or organize but happy to advise and participate.  (Oh, and I think the Doc Tom Awards were my idea, somewhere back there, so I kinda have SOME responsibility to help... ...

  • Posted in: Open Forum

    Gretchen, I have lots of experience with OCR but unfortunately not under the current leadership. I would not get my hopes up. I have yet to see any enforcement around patient right of access - only around security. It's not clear if and when ...

  • Posted in: Open Forum

    At the moment, we have not had anyone express an interest. ------------------------------ The chief cause of problems is solutions. Peter Elias Lifetime member Prior Member-at-large of the SPM Board Retired Family Physician Family Physician Auburn ME ...

  • Posted in: Open Forum

    Hi - they are separate records.  I have to download them to see all of the pages in each .PDF file. ------------------------------ Gretchen Riccardi Montville NJ 9739512199 ------------------------------

  • Posted in: Open Forum

    I'll look into using MailChimp for Town Hall reminders - I agree that I could have done a bit better with the scheduling for this one, and given my own experiences with Google calendar not always letting me know that I have events coming up I can see ...

  • Posted in: Open Forum

    No, Dave - still looking forward to helping however I can in this effort. -- John Hoben Office: +1 585 993 8265 Mobile: +1 585 370 0847 Email: hoben.john@gmail.com Skype: john.hoben1 Twitter: @jhoben Web: http://www.linkedin.com/in/johnhoben ...

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    Posted in: Open Forum

    Robert  Thank you for bringing this article on Participatory Medicine and Health Literacy forward. Our upcoming 'Time 4 Change' SPM conference has a SDOH panel with a Health Literacy component. This is a great framework to work from. Thank you!  Sincerely  ...

  • Posted in: Open Forum

    Agreed - thank you for organizing this, @Brian Eastwood !​ ------------------------------ Dave deBronkart e-Patient Dave LLC SPM co-founder and past co-chair Co-admin for SPM Connect Nashua NH ------------------------------

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

    I wanted to let members of this group know about this free program hospitals can participate in: The Agency for Healthcare Research and Quality (AHRQ) Safety Program for Improving Surgical Care and Recovery (ISCR) is a collaborative program ...

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  • Posted in: Open Forum

    I have started this new thread to respond to @Marge Benham-Hutchins question in this thread : "...how to communicate the working group and board activities to increase transparency within the society. How do you think we can create (increase?) that ...

  • Posted in: Open Forum

    Hello everyone, Advocacy will be meeting on Monday, August 12th from 4 PM - 5 PM Eastern. All are welcome. Feel free to reach out to me at vera@tirhealth.net for an Outlook invitation or to share in any thoughts you may have. Dial in information: ...

  • Posted in: Open Forum

    Based on the author's article in Time magazine this week, I will start a separate topic given their position so we isolate hate from mental illness:  https://time.com/5645747/gun-violence-mental-illness/ Personally I believe hate is a form of mental ...

  • Posted in: Open Forum

    Thanks for sharing -- Danny van Leeuwen Danny@health-Hats.com 617-304-4681 Blog: www.health-hats.com Twitter: @healthhats ------Original Message------ This is a $30,000 grant. The foundation provided us with startup funds for the first several ...

  • Posted in: Open Forum

    http://bit.ly/AugPEblog Patient-experience Know My Story: Learning who people are improves life for older patients, families, caregivers, staff When Susan Shelton's 99-year old father Chet was in the hospital, ...

  • Posted in: Open Forum

    I like the concept, John, and think it's probably a very useful tool. Has anyone done longitudinal studies among those health care systems that use it to determine how useful it is, using various measures? I try to think of myself as a newly diagnosed ...

  • Posted in: Open Forum

    Francie, a very interesting life story (well, chunk of it). I almost went into journalism, but decided religious studies was my bag, instead. So it's interesting to hear a bit of an insider account of trying to get started in the field, and what it's ...

  • Posted in: Open Forum

    I think this is an amazing idea! I'm in the Boston area though! Would love to help! -Karen ------------------------------ Karen Fortuna Dartmouth College 2 Pillsbury Street, Suite 401 ------------------------------

  • Posted in: Open Forum

    I need your help with a reality check about a project to consider the healthcare journey, now and in the future with a roadmap to get from here to there. I am a patient stakeholder working on an Agency for Healthcare Research and Quality (AHRQ) project. ...

  • Posted in: Open Forum

    I'm on it! Let the sharing commence ------------------------------ Amber Soucy, MSN RN S4PM Board of Directors S4PM Social Media Lead Twitter: @wheezynurse Email: wheezynurse@gmail.com Website: wheezynurse.com ------------------------------

  • Posted in: Open Forum

    ------------------------------ Amber Soucy, MSN RN S4PM Board of Directors S4PM Social Media Lead Twitter: @wheezynurse Email: wheezynurse@gmail.com Website: wheezynurse.com ------------------------------

  • Posted in: Open Forum

    An intriguing report, from a family member in a hospice situation, of an ineffective staff person. The author concludes that the staff person was more concerned with protocols and documentation than with the patient. https://www.bostonglobe.com/opinion/2019/07/25/the-night-hung-hospice/A63kg8QedT8FWYOg1SGkcJ/story.html ...

  • Posted in: Open Forum

    Medical Innovation Global Powerhouse Rises in the Middle East It took me a long time to process and publish this piece, which is based on a 40+ minute interview I conducted with Dr. Robert Klempfner, Professor of Medicine at Tel Aviv University and ...

  • Posted in: Open Forum

    I'm looking forward to it. Thank you for moving forward with this. ------------------------------ The chief cause of problems is solutions. Peter Elias Lifetime member Prior Member-at-large of the SPM Board Retired Family Physician Family Physician ...

  • Posted in: Open Forum

    Since the draft document is VIEW only, I assume you want comments here in Connect rather than as comments on the draft document. Will all members of SPM have access to all the group folders in the Initiatives directory, or will access be limited ...

  • Posted in: Open Forum

    The BMJ has just published a strong review of preventable harm (5% of all hospitalizations!). Prevalence, severity, and nature of preventable patient harm across medical care settings: systematic review and meta-analysis Both should be cited ...

  • Posted in: Open Forum

    Thank you Catherine. Having emptied my wallet on the previously mentioned forthcoming Handbook, I will order the two books you mention from the library; and contact Dr. Logan as well. Hoping to meet you some day in Madison or Chicago, wherever our ...

  • Posted in: Open Forum

    I absolutely agree.  But we are going to need a better graphics person to capture it.  :D  I would also add in Industry (biopharma and medical devices), which could lead us to regulators and even policymakers.  The point is, if we have a basic framework, ...

  • Posted in: Open Forum

    Thank you for the details, everyone! I will reach out to @Susan Woods for further questions. ​ ------------------------------ Liz Salmi Patient Senior Strategist, OpenNotes Project Lead, Brain Cancer Quality of Life Collaborative ---------------- ...

  • Posted in: Open Forum

    The mailmen and telephoning (boyfriends) are now using Facebook. That leaves the laundry delivery as the next Facebook service after their Libra currency. Remember, you heard it here first. Adrian -- Adrian Gropper MD PROTECT YOUR ...

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