Home

Welcome.

There is a Quick Start Guide to help get started on the site.

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

    COVID19 Interconnectedness: Health Inequity, the Climate Crisis, and Collective Trauma. Marlene F. Watson Gonzalo Bacigalupe Manijeh Daneshpour ...

  • Posted in: Open Forum

    http://hlc.iha4health.org/home Iha4health Home - VirtualConference2020 The site home page View this on Iha4health > http://hlc.iha4health.org/home  ------------------------------ ...

  • Posted in: Open Forum

    Very good article! Brenda

  • Posted in: Open Forum

    Hi everyone,  The deadline for the patient scholarships is tomorrow. This will be a virtual conference.  From the website:  The AcademyHealth Annual Research Meeting (ARM) supports a healthy exchange of big ideas from a wide variety of voices. This ...

  • Posted in: Open Forum

    FYI - the next #PATH Patient Advocates Transforming Healthcare TuesdayTableTalk is tomorrow:  6/23 from 2-230pm EST. This wee:The Great Reopening- How Patients/Caregivers Feel. Join Hala Durrah , Shari Berman & Charisse (Nikki) Montgomery, ...

  • Posted in: Open Forum

    I moderate a group on FB for people with medical PTSD, like myself. (We get about 1 new person per week.) One of our members is having some serious trouble finding a doctor who will work with her on a urological issue, so I told her that, with her permission, ...

    1 person likes this.
  • Posted in: Open Forum

    I had to chuckle yesterday.  Went for a routine test. Technologist identified herself as a student and asked me if it would be alright if she got some pictures first and then the actual technologist would be in. Of course i said yes. Low-risk setting. ...

  • Posted in: Open Forum

    @Victoria Ferro I can understand your frustration. I should point out that the resistance of the healthcare system to change, particularly in response to outside forces, is legendary. For this reason when we founded the SPM we wanted to entrain the voices ...

  • Posted in: Open Forum

    This is a great week, it seems, for Members publishing their papers! In addition to Ken Master's publication --  Kudos to  @Deb Gordon and her co-authors for a new paper today in Journal of Participatory Medicine/JMIR Health Care Consumer Shopping ...

    1 person likes this.
  • Posted in: Open Forum

    Hi All You might be interested in our recent paper (Open Access) entitled "Surgical patients' use of, and attitudes towards, the internet for e-patient activities in Germany and Oman" published the Annals of Medicine and Surgery and available at: ...

  • Posted in: Open Forum

    One of our corporate partners, the American College of Radiology , is doing work to understand the crucial step of informing patients of the results of radiologic testing, a topic that likely resonates with many of you. Please support this important ...

  • Posted in: Open Forum

    Ah, thanks, Peter. Good article that makes some good points. I like it. For what it’s worth, Alexander, the whole “trauma-informed care” thing sounds great and I’m very, very pleased to see physicians becoming more attuned to this issue of taking ...

  • Posted in: Open Forum

    Hi,  I am a member of the Texas Association for Nurse Leaders and they just implemented discussion forums. I asked about what platform they are using and received this reply:  Our forums are a feature of the Association Management Software we use for ...

  • Posted in: Open Forum

    Thank you for the link. While it is possible to get some insight by listening, the lack of access to the pre-reads and to the slides and other documents discussed and presented is pretty frustrating. Would it be possible for the Board to discuss/revise ...

  • Posted in: Open Forum

    Thank you Brenda I appreciate your reflective thoughts and words of encouragement to all of us. Abreaction: good word.  As I write I have helicopters whirring overhead, the 6th day now, people are worried and are standing up for justice that is a long ...

  • Posted in: Open Forum

    We didn't narrow it down to WordPress. We looked at Vanilla, phpBB, Discourse, MyBB, SMF, Joomla, Drupal, and others. ------------------------------ Every good deed is worth doing. Peter Elias Lifetime member Prior Member-at-large of the SPM Board Retired ...

  • Posted in: Open Forum

    SPM member  @Greg Merritt  ​is helping to kick off the 1st PATH Table Talk this Tuesday. Check it out This week's topic, PFE 3.0- The Way Forward. A candid and thought provoking conversation about Patient Family Engagement in the midst of COVID-19 and ...

  • Posted in: Open Forum

    Dave @Dave deBronkart I can give you an example of the role patients actually play in drug development. In the 1970s, the Candlelighters Childhood Cancer Foundation (CCCF) was formed by parents who had children with Leukemia, and at that time all children ...

  • Posted in: Open Forum

    On Tuesday, May 27th I'll be co-hosting the Healthcare Leadership Tweetchat about educating, communicating with, and supporting patients between in-person or telemedicine consults along with SPM member @Eran Kabakov Check out the short blog:  http:// ...

  • Posted in: Open Forum
  • Posted in: Open Forum

    Based on Maine results, this site is very incomplete. ------------------------------ Every good deed is worth doing. Peter Elias Lifetime member Prior Member-at-large of the SPM Board Retired Family Physician Family Physician Auburn ME 207 576-0716 ...

  • Posted in: Open Forum

    Catherine, Have you spoken with @Gregory Makoul on this important subject? ------------------------------ John Hoben Lifetime Member Society for Participatory Medicine (SPM) https://www.linkedin.com/in/johnhoben hoben.john@gmail.com +1 585 993 8265 ...

  • Posted in: Open Forum

    DANG me - I haven't been paying attention and missed this.  Was it recorded, and/or can you summarize what happened, @Brian Mack ?  Sorry!​ ------------------------------ Dave deBronkart e-Patient Dave LLC SPM co-founder and past co-chair Former SPM ...

  • Posted in: Open Forum

    Excellent, Greg. I shared with over 1,000 colleagues through one group yesterday and plan to share with several thousand more through multiple channels by COBD Friday. -- ________________________________________________________________ John Hoben ...

  • Profile Picture

    Policy?

    Posted in: Open Forum

    When I read the new president's nice introductory letter, the mention of "clinical and patient perspective" prompted a question. Those are two perspectives, but I wonder if the public policy perspective should join them as a pillar of the society? I ...

  • Posted in: Open Forum

    Here is a patient-led research report on "... the experiences of patients suffering from COVID-19 with prolonged symptoms using a data driven approach. The survey content and research analysis are "patient-centric," conducted through participatory type ...

    1 person likes this.
  • Posted in: Open Forum

    I believe it's CMS that gets to set definitions in this situation the magic phrase appears to be "diagnostic test" which you can see defined (very generically) here: https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Downloads/bp102c15.pdf ...

  • Posted in: Open Forum

    Hi Everyone, We are refreshing our SPM brochure and need a short quote from a patient about the importance of participatory medicine and SPM. Pithy and punchy would be great! Thanks, Judy ------------------------------ Judy Danielson ------------- ...

  • Posted in: Open Forum

    Hi Kate, I'll definitely take it and share it! Btw, are you partnering or in contact with Ranak Trivedi at Stanford? She also recently did (maybe is still doing) a survey of family caregiver experience during Covid-19. Happy to e-intro you if ...

  • Posted in: Open Forum

    Hey folks, Hope you and yours are safe and well in these trying times. We're doing a story about changes in the dialysis industry with Covid-19. We're specifically looking for patients or industry folks to go on the record for the story. Here ...

  • Posted in: Open Forum

    That is the big thing. I did know that. And I discussed with my surgeon (twice) and then wrote into two separate consent forms that I only wanted her doing the surgery—if a cut was made, she made it. I was very, very clear. (I recorded these conversations, ...

  • Profile Picture

    RE: Hand sanitizer

    Posted in: Open Forum

    As for use of alcohol to kill the virus according to Pall Thordarson : " Alcohol-based products , which pretty much includes all "disinfectant" products, contain a high-percentage alcohol solution (typically 60-80% ethanol) and kill viruses in a ...

  • Posted in: Open Forum

    Hi SPM members – My company ( Vocera Communications ) is looking for people with inpatient experience to give feedback on a new in-hospital communication solution. If we stay in this COVID-19 mess for long enough, this solution could actually help alleviate ...

  • Posted in: Open Forum

    Further to our discussion on advance care planning - ---------- Forwarded message --------- From: Kristine Wallach < kwallach@coalitionccc.org > Date: Mon, Apr 27, 2020 at 7:15 PM Subject: Let's Stay Connected: Caring for Family & Friends Check-In ...

  • Posted in: Open Forum

    I just had a phone-call from an out of town doctor’s office that wants to conduct a virtual office visit for my husband’s annual checkup. I’m absolutely delighted I now don’t have a three hour return roundtrip to face, wonder about road conditions, traffic ...

  • Posted in: Open Forum

    John, Hoping you are well. I saw this article today and thought of you, interesting what information they are not collecting though. https://www.bostonglobe.com/2020/04/26/metro/assisted-living-sites-struggle-with-covid-19-shadow-nursing-home-crisis/?outputType=amp&event=event25&__twitter_impression=true ...

  • Posted in: Open Forum

    Please consider nominating me for the PCORI Board of Governors as a Patient Stakeholder. I attach my self-nomination letter, a template for you to use, and my Professional Summary to attach. ADDRESSES: Submit letters of nomination and resumes by May 13th ...

  • Profile Picture

    RE: Clinical Trials

    Posted in: Open Forum

    I was part of an asthma study years ago. There was informed consent. ------------------------------ Liz Boehm Experience Innovation Network Cambridge MA 6175131593 ------------------------------

  • Posted in: Open Forum

    I have been searching for some similar collections. I will keep you in mind. ------------------------------ Hunter Kiely Overland Park KS 913-219-9373 ------------------------------

  • Posted in: Open Forum

    The recording of the webinar (and others from NHIT) is now available - lots of free resources for clinics & family caregivers. TY to @MaryAnne Sterling for making this happen:  http://www.nhitc.org/community-transformation-forum.html ​ ------------------------------ ...

WELCOME.

We're glad you found us.

JOIN US!

 

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.

 

We encourage you to visit our SPM website, where you can learn much more about us, including:

 

Our active participatory medicine community based on the four CARE pillars of Communication, Advocacy, Research and Education. We would love to have you join us.

 

Members of the SPM Board.

Most Active Members (based on last 30 days)