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These forums and libraries are the platforms members of SPM use 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 our 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 logged-in members. If you are a member and see this, it means you are not logged in.

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

    With great respect for the work of Liz and Open Notes, I submit to you that the Emory perspective on portals is short-sighted, if not irrelevant.  As we move toward personalized medicine, our health records will cease to be hospital-centered, will be ...

  • Posted in: Open Forum

    Brenda, As far as I know, the categories of copay are primary care and specialist.  Only those 2.  The insurance company determines the copay. If your insurance company says the copay for this office visit is $20, then that is what the provider should ...

  • Posted in: Open Forum

    You may be interested in this proposal for a patient bill of rights for cancer patients that I received from Len Barry. 10 Principles for a Cancer Patient's Bill of Rights Risk reduction Patients have the right to be educated about opportunities ...

  • Posted in: Open Forum

    A number of discussion groups were formed to function as workplaces for specific tasks. Some of these were for projects largely at a Board level, such as advocacy, audit, governance, marketing, membership, organizations partnerships, and travel fund. ...

  • Posted in: Open Forum

    Hi All I agree that this is a good ruling, but there must also be an understanding about the provider's position. They should be allowed to charge, and sometimes for the complete procedure .  To do something even simple like an x-ray requires ...

  • Posted in: Open Forum

    Hi Bob,  It sounds like @Eran Kabakov is going to head up hosting the SPM table as he lives in Florida & the conference is in Orlando this year: April 20-22. More info about the conf is here: https://www.theberylinstitute.org/page/CONF2020_OVERVIEW ...

  • Posted in: Open Forum

    Thank you all at S4PM for your comments I have found through asking a variety of social media outlets that it appears that there might not be any multi language Patient Portal access in any EHR system. I have heard from you and others that there are ...

  • Posted in: Open Forum

    Why I Hate Marriage Proposals: It Has to Do with Medicine Follow the link to my Psychology Today post. I'm sending it out today as it's more of an #antivalentines ​​gift. ------------------------------ Talya Miron-Shatz, PhD. Center for Medical Decision ...

  • Posted in: Open Forum

    Unfortunately I am unable to attend this year... :( I was hoping to gather info from every vendor I could visit (not sure I could get them all :) -- and ask them how many of them had a formal "patient advisor/partners" on their boards/exec teams/office ...

  • Posted in: Open Forum

    Thanks for following up. Peter ____________________________ Peter Elias Certified Green Dot instructor ------Original Message------ The survey will not be distributed immediately.  We are awaiting a summary report that ...

  • Posted in: Open Forum

    I do think there is an issue regarding the privacy and security of data downloaded to apps, and I think that blocking this option limits the opportunity to see novel information services offered via apps that can access health information from EHRs.  ...

  • Posted in: Open Forum

    Thanks again, Brenda.  I fiddled with page margins.   Attached is the corrected one, with date in the filename for clarity; I'll edit both forum libraries.  ------------------------------ Dave deBronkart e-Patient Dave LLC SPM co-founder and past co-chair ...

  • Posted in: Open Forum

    What I am suggesting is *not* an official anything from SPM. What I propose, in this particular case, is a public discussion of this issue on Twitter with a hashtag that doesn't mention SPM. In effect, I am using this list to recruit participants ...

  • Posted in: Open Forum

    Thank you for sorting that out.  I wish I knew why @Kate Lorig couldn't connect. I will try to remember to try to connect to the next ExeCom and Board meetings to test the system, without any plan to stay connected once I see if there is a glitch.​ ...

  • Posted in: Open Forum

    5 SPM Members who formed the Difference Collaborative are partnering with researchers at the John HopTo help understand how we might better support nurses and other employees who are also personal # familycaregivers , please share this anonymous, ...

  • Posted in: Open Forum

    I get almost all of my health care through one very large health system, so I don't have the access issues that most people who signed the letter reported. And as for intercommunication between providers, my problem for a long time was the opposite of ...

  • Posted in: Open Forum

    Hi Karen - thanks for sharing! I find it increases readership of my own articles if I paste in more of a hint of what it's about, e.g. the abstract, and especially broken into pieces appropriate for "ordinary mortals" (vs journals, which always want ...

  • Posted in: Open Forum

    Presumably you saw this, Dr Cordovano, but in case you didn't: https://twitter.com/culehmann/status/1221117897772347392 ------------------------------ Catherine Smith Stoughton WI ------------------------------

  • Posted in: Open Forum

    May be more effective if you ask the relevant parties. @Eric Bersh is our secretary @Deb Gordon leads membership @Lynda Mitchell leads governance @Joseph Ternullo leads the conference (but there have been no meetings since the conference) @Jan ...

  • Posted in: Open Forum

    You're right, John. I either wasn't aware of these resources from the Joint Commission, or else I had forgotten about seeing them before. I think the handout from my hospital is more detailed than the one from the Commission (or perhaps is a compilation ...

  • Posted in: Open Forum

    From BMJ Patient Editor Juliet Dobson. All three pieces are open access. At bottom I'll paste in the research paper's Visual Abstract. ========== The BMJ has just published a new package of articles on the topic of patient organisations financial ...

    1 person likes this.
  • Posted in: Open Forum

    Oo, just ran across this weekly event in Blackford Middleton's Nuzzel newsletter, from the Society to Improve Diagnosis in Medicine.  It's targeted to med students but what a great opportunity for us to learn things and listen in on their conversations.  ...

  • Posted in: Open Forum

    https://www.linkedin.com/posts/activity-6624947830236725248-D06B Linkedin Sign Up | LinkedIn 500 million+ members | Manage your professional identity. Build and engage with your professional network. Access ...

  • Posted in: Open Forum

    Thank you Peter I will reach out to David. ------------------------------ 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 ...

  • Posted in: Open Forum

    @Thomas Caruso , @Jan Oldenburg Do you know of a review of this book? Thanks for alerting us to that book. I have included Jan because she has published for HIMSS regarding participatory medicine. Would you pass along a link to a review of the book. ...

  • Posted in: Open Forum

    The lobbying goes much deeper than people realize. CARIN Alliance has been set up by would-be intermediaries that want to keep patients from being able to direct sharing of records among Epic and other provider systems. https://thehealthcareblog.com/blog/2019/12/18/patient-directed-uses-vs-the-platform/ ...

  • Posted in: Open Forum

    Dave, Thank you for sharing. I was in a sort of heated discussion with a friend about this Saturday evening, where he was insisting the current situation is similar to historical Pakistan/Indian feud. I kept saying no this is current situation is much ...

  • Posted in: Open Forum

    Thank you again, Kate! So glad for your participation here. I've been involved in a very modest amount of peer review myself, and I've been pretty shocked at show schlocky it can be, failing to spot things that even I can tell are poorly done. And that's ...

  • Posted in: Open Forum

    I too noticed that I have the ability to add photos/ images on my patient portal at KPWA.  Another opportunity us KPWA  portal users have available, is the ability to add a thumbnail photo of ourselves to our patient portal main page that pops up when ...

  • Posted in: Open Forum

    Fascinating and challenging post, Peter.  I've never heard it put that way. Who are the exemplar organizations you've seen, in this framework? Have any of us ever seen an organization flip from faith to "religion" or the other way? ------------------------------ ...

  • Posted in: Open Forum

    Thanks for the feedback, Peter. I'm going to think about what you've written.... I mean, really give it some thoughtful brain time. As for the "bargaining" thing...that is precisely what the hematologist and I did at the end of May last year. I conceded ...

  • Posted in: Open Forum

    Finally made time to read this. Nice paper. We've come a long way. The paradox, of course, is that we also have a better understanding of how long the total journey will be. ------------------------------ The chief cause of problems is solutions. Peter ...

  • Posted in: Open Forum

    As a nurse, this looks very familiar. This is what we had to decipher in both provider notes and orders sections of the paper health record. Not only were there issues with the handwritten style for immediate patient care, these notes had to reviewed ...

  • Posted in: Open Forum

    Had I seen it in 2018, I would have posted about it then.  I posted today because that's when I saw it. Thanks to a Tweet. I posted it because of its relevance to OUR annual conference and to SPM's mission in general. I know we provide some assistance ...

  • Posted in: Open Forum

    Precision medicine - we're in the earliest days, compared to where we will probably be someday. I have nothing to add about that drug, but in light of Brad's response, I'll note something about my own kidney cancer case. (Long-timers already know this ...

    1 person likes this.
  • Posted in: Open Forum

    contact me off line lorig@stanford.edu ------Original Message------ Hi Kate, I'll definitely take it and share it with my network. Care partners/family caregivers is my main focus these days, so I'd LOVE to hear more about the scales you're working ...

  • Posted in: Open Forum

    Done :-) ------Original Message------ Holy crap, a blog post I wrote, linking to this "one-pager," just got published a week earlier than planned.  So it's time to finish ASAP. https://www.solutionreach.com/blog/important-hipaa-update-new-penalties-clinics-get-85000-fines-for-not-releasing-data-to-patients ...

  • Posted in: Open Forum

    It's in the original post  (November 22nd) about the Town Hall when it was scheduled for December.The contaxt information was not added to the announcement about rescheduling.  Here is the info, assuming it is still accurate:   ...

  • Posted in: Open Forum

    Here's a short blog post that made me feel good. It is written by Dr. Hans Duvefelt, a family physician in Maine whom I know (and respect) from the time he was a resident and I was an attending and a part-time faculty member in our local residency. ...

  • Posted in: Open Forum

    Fair point. ------------------------------ Michael Millenson Health Quality Advisors LLC Highland Park 312-952-1075 ------------------------------

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