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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

    Hi Sarah - My undergraduate degree was in gender studies, and while the discussion and norms around gender have evolved significantly since then, it's still something I pay attention to. On surveys, I've gone to the options of "male, female, other." ...

  • Posted in: Open Forum

    Is the answer to this for the US to adopt the "right to be forgotten/deleted"? What is the solution to protecting yourself? -- Joe Schneider drjoes1tx@gmail.com 469-805-5628 ------Original Message------ Hi All Just throw in a fox, one ...

  • Posted in: Open Forum

    The following may be of interest to S4PM'ers et al, feel free to fwd to people who may be interested. Wen Dombrowski, MD, MBA Chief Convergence Officer Wen@CATALAIZE.com www.CATALAIZE.com www.LinkedIn.com/in/WenDombrowski www.Twitter.com/HealthcareWen ...

  • Posted in: Open Forum

    I was just notified that I received a scholarship - i think they sent me the email the following day. Thanks and see everyone in Vegas! ------------------------------ Geri Lynn Baumblatt, MA Patient Engagement, Health Literacy, Shared Decision Making, ...

  • Posted in: Open Forum

    Basically it means getting the HIMSS member rate off the ticket (about $200 I think). more expl is "HIMSS18 Collaborators represent non-profit organizations collaborating with HIMSS to establish a mutually synergistic and complementary relationship to ...

  • Posted in: Open Forum

    Thank you Cathy for sharing your wisdom and strength. It brings to mind the "Teachings of Don Juan" wherein he says the 4 natural enemies of a man of knowledge are FEAR, CLARITY OF MIND, POWER and OLD AGE (in some versions of the book, the 4th is DEATH). ...

  • Posted in: Open Forum

    Dear SPM Community, I am an advisory board member of the NYC Health Business Leaders group ( www.NYCHBL.org ), and we are putting together a facilitated discussion about clinical trials and the patient's perspective. Our events are well-attended ...

  • Posted in: Open Forum

    http://www.patient-experience.org/Resources/Blogs/DM-Blog/Blogs/February-2018/Connecting-the-Social-Dots.aspx Patient-experience Association for Patient Experience - Connecting the Social Dots View ...

  • Posted in: Open Forum

    Finally had a chance to read your piece Grace. Outstanding. Congrats.  Very much aligned with our discussions about buzz words like "engagement" which are mostly used to mean compliance.  The full patient experience includes Medicine (can I beat this ...

  • Posted in: Open Forum

    Thanks for sharing, Dave. I'd like to see more action and less talk. I think we need more intent from organizations that know how to make this happen. My perspective the people who need data sharing the most are people with serious health problems, and ...

  • Posted in: Open Forum

    Dear Patients and Caregivers. Please check out this opportunity to get to participate in the conference with a travel stipend and free registration...check out the link here.  https://health2con-paxfp.formstack.com/forms/himss_pt_2018 Formstack ...

  • Posted in: Open Forum

    FYI, the Lown Conference is in D.C. April 9-10. They currently have $75 early bird student/trainee rates and a $225 early bird advocate rate until Feb 28. Casey and I will be there. If others plan/decide to attend, let us know. It's also been added to ...

  • Posted in: Open Forum

    Jim, That makes so much sense! Thanks for sharing! Sandra Raup ------Original Message------ Love the writing and the deep understanding of the patient experience. I would add that SPM is uniquely positioned to recommend, validate, & support innovation ...

  • Posted in: Open Forum

    Thanks Ken. It's now on the SPM calendar . - Danny Daniel Z. Sands, MD, MPH, FACP, FACMI Co-Founder and Board Chair, Society for Participatory Medicine Assistant Clinical Professor of Medicine, Harvard ...

  • Posted in: Open Forum

    ​​The American Heart Association is making available three complimentary registrations to the Quality of Care and Outcomes Research conference for patient advocates. Please contact me if you are interested (mannm@comcast.net). The conference is April ...

  • Posted in: Open Forum

    Hi everyone!  SPM is getting ready to release the new application for upcoming conferences to assist patients to receive up to $500 to participate in conferences. We are a small group and need a few hands to keep the love and $$ flowing into the hands ...

  • Posted in: Open Forum

    I wanted to let everyone know I'm working on an SPM Reception in Chicago to coincide with the Beryl PX Conference on April 17 at the Chicago Hyatt. So let me know if you'll be attending the conference and can attend and help out. Danny van Leeuwen, MaryAnne ...

  • Posted in: Open Forum

    Hi Michael - in addition to the excellent resources and input from everyone on this thread, have you spoken with Dr. Randall Porter or any of his team for additional background?  See this site  http://www. themedicalmemory.com/about   for details.  ...

  • Posted in: Open Forum

    Jim,  Here is the link to my main page at Inspire.com. It is made up of 226 online Health and Wellness Groups/Communities. While my writing is public, I am not sure if the replies are... They are what I think members of this group would find interesting. ...

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    HIMSS2018

    Posted in: Open Forum

    All: SPM is a HIMSS collaborating organization and will be at HIMSS2018   in Las Vegas on March 4 to 9.   As a collaborator, SPM members receive the member discount to attend!  To receive the discount, go to the   conference website   and select ...

  • Posted in: Open Forum

    Thanks Mike, completely agree. It's amazing how many health care conferences talk about people and patients but don't talk with them. Look for conferences that get Patients Included accreditation. The SPM conference had it last year and we got accreditation ...

  • Posted in: Open Forum

    Hello Everyone, Just a quick note to introduce myself. My name is Michael Twomey from Cork (Ireland). I am a 45 yr. old husband, father and patient with Cystic Fibrosis (CF), but I truly believe in a very positive mind-set towards my condition. With ...

  • Posted in: Open Forum

    Great job again Grace you hit the nail right on the head. The most frustrating thing to me is that all of this "preliminary" work was supposed to have been completed BEFORE the ACA was implemented. True Patient Centered Care (with engaged patients and ...

  • Posted in: Open Forum

    ​Great to hear! Marilyn ------------------------------ Marilyn Mann Kensington MD (301) 520-5488 ------------------------------

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    Why Not Me...

    Posted in: Open Forum

    Gary and I have much to be thankful for this year. February will mark five years since my heart went off the reservation and we were told that, without an immediate transplant, I had just 3-months to live. Thinking back to the frightening months following ...

  • Posted in: Open Forum

    Hello. Hi there, last year, in advance of the Society's inaugural meeting, the Society of Participatory Medicine formally re-launched its travel scholarship fund. The fund is supported by private and public donations, such as the American College of ...

  • Posted in: Open Forum

    The Journal of Participatory Medicine is seeking to expand its Editorial Board. The journal, now part of the Journal of Medical Internet Research , JMIR, is actively reviewing and publishing papers relevant to PM.  Members of the Editorial Board ...

  • Posted in: Open Forum

    I know TEFCA. TEFCA (Trusted Exchange Framework and Common Agreement) is draft regulation in response to the 21st Century Cures Act passed in December 2016. Some of the roughly 350 pages of the Cures Act deal with making it easier for consumers and patients ...

  • Posted in: Open Forum

    Very fitting analogy, Peter. Awareness on their services would be exponentially better than "resiliency training."  Great seeing their work in this important area. I'll reach out to them regarding SPM. ------------------------------ John Hoben Lifetime ...

  • Posted in: Open Forum

    Hello All, I've attached two topics brought forth and evaluated by the Advocacy Committee as examples of the process. 1) FDA CDS Guidelines 2) Legislation on Rural Med Records Please feel free to surface any additional topics to the Advocacy Committee ...

  • Posted in: Open Forum

    Dear Members: Audrey Kinsella is a writer about home health care. She is looking for input from our members for an article she is writing. With her permission I am sharing her lightly edited e-mail. Please respond to her directly; her e-mail address ...

  • Posted in: Open Forum

    I recently joined the Savvy Coop and have had a great experience so far. Lots of great support among members and a lot of opportunities for patients to put their skills and experience to use but actually be compensated for it for once. Second this recommendation ...

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    Botox and Medicare

    Posted in: Open Forum

    Hey folks, Anybody here with expertise on Medicare reimbursements? I have a very specific question. Regarding Botox treatments for therapy (not cosmetic). We see wildly varying rates -- lower for some docs and much higher for others. Thanks ...

  • Posted in: Open Forum

    Thanks, Marilyn! Sandra Raup ------Original Message------ ​I attended the Healthcare Innovation Summit last year and was a reviewer on the article. There were some other patient advocates there as well. I don't have any ongoing involvement. ...

  • Posted in: Open Forum

    Most of you know WEGO Health , a corporate partner and sponsor of S4PM. WEGO matches businesses and enterprises (pharma, researchers, entrepreneurs, etc.) with patient experts. I know that many of you have found good paying gigs through WEGO. In 2017 ...

  • Posted in: Open Forum

    Hi everyone, The newsletter team is in the process of finalizing the winter newsletter. If you have published a piece you would like included in the upcoming edition, please email me the title and link at enlighteningresults@gmail.com by no later than ...

  • Posted in: Open Forum

    Imagine two approaches to making airline travel arrangements for a vacation. In the first instance, you get to pick the itinerary and destination, then you decide on dates to fly, what class of tickets to buy, what size car to rent, what hotel ...

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    Rare disease day 2018

    Posted in: Open Forum

    The official @ rarediseaseday 2018 poster is out Share with your friends and let's spread the word about # RareDiseaseDay #2018 Download the poster from rarediseaseday.org/downloads # showyourrare ------------------------------ ...

  • Posted in: Open Forum

    Yes, I agree that this shouldn't reassure white women that they are safer, although I believe the statistics that African Americans can experience less careful care. I wonder if part of this is trying to systematize every single decision so no thinking ...

  • Posted in: Open Forum

    Hi All While I do think that there is over-testing and other medical "overuse", to be fair to health professionals, applying medicine is not like applying Newtonian Physics.  In many cases, symptoms point in a general direction, and then tests have to ...

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The Society for Participatory Medicine (SPM) is a community dedicated to helping patients, caregivers, and health professionals work collaboratively to meet the patient's health needs, as defined by the patient. You are visiting a tool we use for communication and collaboration within our community. This list of recent posts in our Open Forum provides a flavor of the wide variety of topics and projects of importance to members of our SPM community. There is much more available to members of the Society.

 

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Joseph Ternullo (President)
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