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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

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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 ...

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    RE: How change happens

    Posted in: Open Forum

    Correct. Sloppy wording on my part. Her story illustrates how change happens. She doesn't actually say that. ------------------------------ The chief cause of problems is solutions. Peter Elias Lifetime member Prior Member-at-large of the SPM Board ...

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    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 ...

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    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 ------------------------------

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

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    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, ...

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    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 ...

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    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 ...

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    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 ...

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    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 ...

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    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 ...

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

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    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 ...

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    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? ...

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  • Posted in: Open Forum

    Danny -- Here's a new article that just published: Patients as diagnostic collaborators: sharing visit notes to promote accuracy and safety, Diagnosis Charlotte R. Blease / Sigall K. Bell Published Online: 2019-04-30 | DOI: https://doi.org/10.1515/dx-2018-0106 ...

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    See also the "information blocking" task force meeting this Friday May 3, at bottom. ---------- Forwarded message --------- From: ONC Health IT < donotreply@connect.hhs.gov > Date: Tue, Apr 30, 2019 at 10:34 AM Subject: NEW ONC Workshop Register ...

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    Vince, How much of research done by well-intentioned academics ends up benefitting corporate profits at the expense of patients? How much patient data is turned into secret black box algorithms with unknown biases, for profit. How much will treatment ...

  • Posted in: Open Forum

    https://www.ncbi.nlm.nih.gov/pubmed/30741175 Good paper. Taking people's data for profit because HIPAA or an IRB says it's ok is an ethics issue. We all pay for that through higher costs and risks born of secrecy and exclusivity. Put patient autonomy ...

  • Posted in: Open Forum

    Hi, @Geri Baumblatt - thank you so much for your leadership of the Chicago group. I'm new to the Board as a Member-at-large. I'm catching up with this string. I love the idea of storytelling as a way to share experiences and have seen this as an integral ...

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    @Brian Eastwood .What are you looking for me or us to do on this topic? I'm a little unclear. Thank you, Kathy Kathy Duckett MSN, RN President K. Duckett Consulting ...

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    @Amber Soucy, MSN RN !  Thank you for setting up the IG account - let us know so interested parties can follow, reshare, etc! :-) In fact do you have a handy list of our social account URLs??  ​ ------------------------------ Dave deBronkart e-Patient ...

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    The next Chicago Participatory Medicine Meetup is May 9th. Please share with any friends in Chicago who are interested. People need not be a member to come check it out.   Games for Health Consider how games and gameification may be used ...

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    In the thread on Innovation @Dave deBronkart mentioned this book that tells the patient success stories. Here is the correct title and complete citation should you want to locate the book. The Other Side of Impossible:  Ordinary People Who Faced Daunting ...

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    I'm sure most, if not everyone, here has seen the JAMA investigation piece from October of last  year, but ICYMI:  Assessment of US Hospital Compliance With Regulations for Patients' Requests for Medical Records I nformation sharing w/person(s) involved ...

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    The other day in the Research & Evidence section,  @Ken Masters  ​published an interesting question: Would patients be prepared to fund academic Open Access articles about patients? There's lots of discussion already - go have a look. (I'll close ...

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    @Dave deBronkart - tagging you as I know this would be right up your alley on so many levels, not the least of which you're probably one of the few SPM members who know of George :-) ​BOLO for a new monograph George is writing for The Discovery Institute ...

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    Thanks, Richard. I have a few very positive and warm memories of how I was cared for during my cancer treatments. This young woman provided one of them. Brenda ------Original Message------ Brenda, I very much enjoyed your story about ...

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    ---------- Forwarded message --------- From: Tomlinson, Andrew (OS/ONC) < Andrew.Tomlinson@hhs.gov > Date: Fri, Apr 19, 2019 at 09:23 Subject: Next Steps in Interoperability: Extensions for ONC and CMS Proposed Rule Comment Periods with Release of ...

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    Adrian, are you following @Richard Gibson and the excellent work of HRBA in ​​this realm? See http://HealthRecordsBanking.org for details. Good stuff.  ------------------------------ John Hoben Lifetime Member Society for Participatory Medicine (SPM) ...

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    Nicely done, Dave!  Nicely done!  :)  It may take many drips of water to wear away the boulder in our way, but it can be done. I'm thrilled you got this piece into a journal with the stature of the BMJ.   Brenda ------------------------------ Brenda ...

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    brenda, this would be more than welcome! thank you!  I will reply to you directly in getting it to you in an easier to edit format. ------------------------------ Narinder Singh Oakland CA 14154491690 ------------------------------

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    > I am now exploring how OpenNotes and palliative care intersect. Stay tuned for that... ;) Where's my "grabs popcorn to watch eagerly" GIF/meme? :-)  ------------------------------ Dave deBronkart e-Patient Dave LLC SPM co-founder and past co-chair ...

  • Posted in: Open Forum

    This just (in print) from the journal *The Oncologist*:  "I need to know what makes somebody tick …": Challenges and Strategies of Implementing Shared Decision‐Making in Individualized Oncology Joschka Haltaufderheide (joschka.haltaufderheide@rub.de) ...

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    Love it. Some years ago I visited a Primary Care Progress clinic in Cambridge MA - as I recall, they said they don't have waiting rooms because even though there's no office staff in the usual sense, everyone who walks in the door is greeted and escorted ...

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    I'm interested! Please keep me posted as plans progress! ------------------------------ Liz Boehm Experience Innovation Network Cambridge MA 6175131593 ------------------------------

  • Posted in: Open Forum

    Interesting article. I could go with a more linear "continuum of needs" or a picture of "concentric circles of needs" or any other graphic one wished to use rather than a pyramid (nesting boxes of needs; a spiral of needs). That there are ...

  • Posted in: Open Forum

    Good morning, all! I received a request for information regarding implantable and wearable devices from David Lee Scher, MD via Twitter. He is giving a talk regarding what patients would want from such devices. If you have any input you would like to ...

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