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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

    Greetings S4PM These days we are all virtually connecting more. We need to remember to use artificial tears for better eye health, take a screen break, get some fresh air and exercise as well as eat right. I expect for most of us on S4PM virtual meetings ...

  • Posted in: Open Forum

    This is a very interesting article.  Although the study was done two years ago, the results highlight a lot of issues that we are seeing play out in the face of COVID-19.  It feels like a call to action.  Here are a few things that I think SPM might be ...

  • Posted in: Open Forum

    The Weather Channel has a COVID-19 page that will break it down to the county level for you, so that you can track cases and deaths for your immediate area, as well as by state and larger governmental units. Brenda ------Original Message------ Our ...

  • Posted in: Open Forum

    Catherine @Catherine Smith NEW TOPIC:  SPM's role in the dissemination of valid health information I think that you have raised a point that is relevant to the role of an organization such as the Society for Participatory Medicine What you wrote: ...

  • Posted in: Open Forum

    I don't know how to respond to this question. It has been addressed often in recent reporting. For one thing, there was a pandemic playbook developed byt the NSC in 2016 that apparently was ignored - as reported by Politico, Business Insider, KSC, Kaiser ...

  • Posted in: Open Forum

    @Dave deBronkart Thank you Dave for bringing up this topic. I have been preparing for what to do to manage the symptoms. You know,  a lot of us are going to be home feeling sick and will want to tackle the symptoms. I am a little frustrated that ...

  • Posted in: Open Forum

    "until we know how to read these bills we will be at the mercy of a medical system" The quote ("until we learn how to read") seems to beckon the angel of health literacy. I may have previously mentioned my own experience in this regard. I recently ...

  • Posted in: Open Forum

    @Eran Kabakov is doing 15 minute demo webinars every day this week as well​​:  Daily, 15 minutes, introduction webinars 3/23-27 12pm EST https://bit.ly/2UaDcRj ------------------------------ Geri Lynn Baumblatt, MA Pnicipal, Articulations Consulting ...

  • Posted in: Open Forum

    Sorry if this has been discussed already. I just received this email from Quest regarding my son's lab results. Seems if I pay cash for a lab test directly to Quest, I can see the results online the moment they are ready. If my doctor orders a lab test, ...

  • Posted in: Open Forum

    In participatory medicine fashion, here's a resource on the British Medical Journal (BMJ) best practices website tracking emerging treatments (and other pertinent data) for COVID-19:  https://bestpractice.bmj.com/ topics/en-gb/3000168/ emergingtxs ...

  • Posted in: Open Forum

    Dear fellow board members, I hope everyone is staying safe from COVID-19 and maintaining outside connections. To assist with that, and in case you haven't had enough Zoom conferences, we have our board meeting Tuesday 3/24 at 6pm. The agenda is here ...

  • Posted in: Open Forum

    Beth, What about a third option? Is it possible for some/much/all of the observations typically done in the hospital for possible stroke patients to be done BY the patients, themselves, or their caregivers? How complex are these observations? Would ...

  • Posted in: Open Forum

    Brenda @Brenda Denzler , I think your intra-operative notes are covered by this item in Dave's message A vastly expanded set of data will now be the default data set, including Open Notes.  It's not explicitly mentioned as "OpenNotes" but all the ...

  • Posted in: Open Forum

    So very hard to speak up to providers we are so heavily dependent on.  What a great role model, and inspiration to do so anyway.  Thanks for sharing. ------------------------------ Sandy Rose Madbury NH ------------------------------

  • Posted in: Open Forum

    Hi All (I originally posted this in the Research forum, but Dave suggested I also post it here). Colleagues and I have just published a paper in the JMIR (open access) on Surgeons' interactions with and attitudes toward e-patients in Germany and Oman. ...

  • Posted in: Open Forum

    I know, right?! It was crazy! We were trending today, a day later. We are still crazy popular!! And we made a ton of new friends. Traffic on the site nearly DOUBLED yesterday. So excited!! Jeanne Pinder Founder, CEO, ...

  • Posted in: Open Forum

    Cool opportunity: Robert Wood Johnson Foundation is supporting a convening of patients/advocates who will learn from each other. A convening for patients, by patients (and care partners). We call it " Convening the Center ."  Who can attend? ...

  • Posted in: Open Forum

    We do a lot of translation of patient facing materials for deployment in different countries, and need to get text approved by ethics committees and IRBs.   We never rely on an automated translation tool for anything that goes in front of a patient.  ...

  • Posted in: Open Forum

    Thanks @Beth Barnett !  THCB just posted my take on the Cures regulations. It's based on SPM's work and features the the video by @Dave deBronkart and Morgan. https://thehealthcareblog.com/blog/2020/03/11/a-patients-view-of-the-cures-regulations/ ...

  • Posted in: Open Forum

    I would like to add the cost of dental care in the United States to the topic of unethical pricing. ------------------------------ Beth Barnett, RN, BSN, PhD Lifetime Member Society for Participatory Medicine ------------------------------

  • Posted in: Open Forum

    I just got this info in about Belk's book: Hello again everyone! My book The Great American Healthcare Scam: How Kickbacks, Collusion and Propaganda Have Exploded Healthcare Costs in the United States is now available for ...

  • Posted in: Open Forum

    Adult patients, caregivers and clinicians can find evidence based community programs (usually free at this site. http://www.eblcprograms.org/evidence-based/map-of-programs/   These programs have all been vetted by the Administration for Community Living ...

  • Posted in: Open Forum

    Thanks, I will try that. ------------------------------ Marilyn Mann Kensington, Maryland @MarilynMann (301) 520-5488 ------------------------------

  • Posted in: Open Forum

    Please reply privately to Nahed directly at their email address below if interested in this opportunity. Thanks! ---------- Forwarded message --------- From: Nahed < nkhairy@naphse.org > Date: Thu, Mar 5, 2020 at 2:16 PM Subject: inquiry ...

  • Posted in: Open Forum

    @Heather Kho I don't have any resources to offer. I have empathy for what they are going through because of my daughters' experiences. It has also sensitized me to other patients' needs as well, whether or not they are AYA. For example, I always discuss ...

  • Posted in: Open Forum

    The AMA just published the ultimate guide to patient right of access. Our plain email point is clearly supported on page 23. http://go.politicoemail.com/?qs=a56214e30b03c3f6009138a04e8ce5c7e6573485e6f77a2ed6de00a8aaaf4ef0d158df8d3d08a0280c995baced8545f9 ...

  • Posted in: Open Forum

    In addition to being limited, their Search function depends on their back-end indexing process which (based on conversations I hve followed in the HUG support group) has some serious issues. ------------------------------ The chief cause of problems ...

  • Profile Picture

    Thread hijacking

    Posted in: Open Forum

    We no longer have anyone actively adminstering or moderating the discussions on Connect. That means it is up to users to remember that a new topic requires a new thread. Please don't 'hijack' a thread about a subject by starting a discussion of something ...

  • Profile Picture

    RE: board meeting

    Posted in: Open Forum

    Yes we welcome board observers. Please make sure you identify yourself on the call/video. https://zoom.us/j/4373789884 FYI the agenda has changed because the final report for survey won't be available for another few weeks. We have a packed agenda tonight. ...

  • Posted in: Open Forum

    Ofri and Rosenthal remind me of Matt Taibbi's description of Goldman Sachs in Rolling Stone Magazine : "The world's most powerful investment bank is a great vampire squid wrapped around the face of humanity, relentlessly jamming its blood funnel into ...

  • Posted in: Open Forum

    Maybe Adrian. But only if you view the patient portal as a way to access your medical record information. In fact there is much more to a portal than that, including secure communications with one's healthcare team and convenience transactions, such as ...

  • Posted in: Open Forum

    The journal BMJ Quality & Safety just notified me that they printed a letter of mine that appeared online (without my knowing it) in May, 2019. OK, less a letter than a semi-sarcastic email responding to an article on differences in patient experience ...

  • 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

    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.  ...

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