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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

  • Profile Picture

    RE: SPM Manifesto

    Posted in: Open Forum

    Ha! Not so secret. Just took a long time to pull it together. All the content came from SPM 2018. We just cleaned it up a bit before sharing. No secret society! Sent from my iPhone ------Original Message------ Burt, WHOEVER did this work, I really ...

  • Posted in: Open Forum

    Dave, I have experienced clinicians not giving me information and options for my treatment that I found out about either on my own or, later, from other doctors. This was in the context of a large clinic/hospital system, where all such options were discussed ...

  • Posted in: Open Forum

    @Robert Becker , I agree that "structures and processes" can become bureaucracy, which is the last thing we want ... but I'll hazard a guess that @Ankita Batla was grasping for some sort of ​​GUIDELINES by which we can say "THIS is participatory - THAT ...

  • Posted in: Open Forum

    BEastwood!  (For those who don't known, that's his email address.)  Great to see you here - lots of questions, as you've seen, but don't be scared a way - as with e-patients, questions are a sign of engagement, which is a good thing!  If you need help, ...

  • 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

    I think that most forward-thinking hospitals (or hospitals/clinics that want to APPEAR TO BE forward-thinking) already have a patient bill of rights. I very much like the version Jim Dempsey has shared with us, below. It would be very interesting ...

  • 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 ...

  • Posted in: Open Forum

    Hey there, onpassing for an acquaintance at Google's spinoff Cityblock -- serving underserved communities. Well funded, SDOH. Here's some news coverage . I'm just the messenger -- not in contact with those doing the hiring! cheers jeanne Job ...

  • Posted in: Open Forum

    Hi All (This is long - apologies) The way I see it, Participatory Medicine would be far broader (also strongly interlinked).  The e-patient would be more focused, but would have links to issues in PM. The first real problem is that we cannot make a ...

  • Posted in: Open Forum

    https://www.eventbrite.com/e/july-16-chicago-participatory-medicine-meetup-tickets-62506986078 Eventbrite July 16: Chicago Participatory Medicine Meetup Join us for the Society for Participatory Medicine's ...

  • Posted in: Open Forum

    Hi Peter, Interesting timing, I actually just started collaborating on a blog with Cindy Brach at AHRQ about the question builder app for AfPE. So I'll be learning more. I've asked her to find out if there's any data or even anecdotes on how it's impact ...

    1 person likes this.
  • Posted in: Open Forum

    Linda, welcome to SPM. We're delighted having you in our midst. Absolutely love what you're doing. You mentioned "community wisdom" in your description. Are you familiar with what fellow SPM member @GregMakoul is doing at PatientWisdom (a client ...

  • Posted in: Open Forum

    Dear Colleagues: A number of SPMers provided me with useful references that helped me prepare for this workshop on how patients can be helpful at improving healthcare #quality and #safety , which I've entitled "Leveraging the Least Utilized Resource." ...

  • Posted in: Open Forum

    So, here's the article. Amazing how crisp my memory is for things like this. 1991! See >>> pointers. Putman, A. O. (1991). Empowerment: In search of a viable paradigm. Performance Improvement Quarterly, 4 (4), 4-11. http://dx.doi.org/10.1111/j.1937-8327.1991.tb00519.x ...

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    RE: Metrics

    Posted in: Open Forum

    Yup. Buying a guitar doesn't make me a musician. Buying binoculars doesn't make me a birder. ------------------------------ The chief cause of problems is solutions. Peter Elias Lifetime member Prior Member-at-large of the SPM Board Family Physician ...

  • Profile Picture

    Dartmouth Study

    Posted in: Open Forum

    Watch for the results of this patient decision aid study. ---------- Forwarded message --------- From: Peter Scalia < noreply@dartmouth.edu > Date: Fri, May 24, 2019, 2:33 PM Subject: REMINDER - Please provide additional feedback on the best way ...

  • Posted in: Open Forum

    Hi Denise, I second that. We can reach out to our contacts at Beaumont Health. Please let me know. Thanks. ------------------------------ Nikola Nestorov Turas Health Chicago IL ------------------------------

  • Posted in: Open Forum

    Congratulations! ------------------------------ Dee Sparacio #gyncsm Community Hightstown NJ ------------------------------

  • Posted in: Open Forum

    For anyone interested in this topic, I came across this today on LinkedIn. Facebook is Gaslighting Us . I'm going to poke around to see how their interface works to migrate people off FB. ------------------------------ Lynda Mitchell, MA, RHIA, ...

  • Posted in: Open Forum

    The exotic condition that our system can't cope with is Type 1 diabetes.  The exotic medicine with this bureaucracy around it is insulin. Continuing: As a Type I Diabetic, my friend needs insulin. The effects of not having insulin are very bad, and ...

  • Posted in: Open Forum

    Continuing a discussion about storytelling started by the Chicago Chapter of SPM, here is a link to Oliver Sacks's Final, Posthumous Work , an enlightening review in the New York Times. Dr. Sacks was one of the great medical storytellers - about patients ...

  • Posted in: Open Forum

    Soojin, appreciate the feedback!  After reading it, I did a search on " using the phrase special needs " and learned a lot!  I have long understood the importance of the distinction between empathy and sympathy, for instance, but hadn't thought of this ...

  • Posted in: Open Forum

    The May  blog is up: on helping people make health decisions & Slow Medicine:  http://bit.ly/MayPEblog Patient-experience Slow Medicine Monday, May 06, 2019 When partnering with people as they make ...

  • Posted in: Open Forum

    Interesting post Kevin. Regarding the analog of continuing medical education that you mention, it's worth adding that CME's tool for engaging clinicians is credit. Participants receive credits they need for medical licensing. Health education, on the ...

  • Posted in: Open Forum

    I feel like interjecting here - although it may not matter to the meat of the discussion. While Jack Wennberg and others at Dartmouth made a huge impact on the field - it isn't really accurate to say that they came up with SDM. Certainly, one could argue ...

  • Posted in: Open Forum

    An excellent blog! Thanks for sharing.  I was particularly struck by this statement:  "Any questions about my immediate and distant future that didn't directly relate to my disease were dismissed."  Although I faced cancer at the age of 56, I experienced ...

  • Posted in: Open Forum

    Yes, You are correct. Thank you, Peter ------------------------------ Joseph Ternullo Lynnfield MA 617-688-7031 ------------------------------

  • Posted in: Open Forum

    Thanks for posting this, Peter.   I will add or reinforce a few comments for clarity. The governance committee's role is to make recommendations to the board. It has no authority to change anything in the bylaws or to be the governance police for ...

  • Profile Picture

    Show Me The Money!

    Posted in: Open Forum

    Hi everyone- I am working with Duke on a project focused on Compensation Rates for Patients & Caregivers. Our goal is to understand the variation in compensation rates. Insights gathered will ideally help inform future best practices, as patient ...

  • Posted in: Open Forum

    "The doctor-patient relationship isn't always what we hope for. We're doing a series of stories on that relationship, and we want to hear from you. What do you wish you knew about the way your doctor thinks? What do you wish you could tell your doctor? ...

    1 person likes this.

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