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One more thing, @Danny van Leeuwen - again I urge careful consideration of what a given context means by "engagement." I've found it really useful to point to Arnstein's Ladder of Citizen Participation, which is explained starting at  2:45 in the "slide ...

Just be aware that difficult diagnoses don't ALWAYS mean someone's doing something wrong, nor that any particular conclusion is right.  I'm a little concerned by the not-very-scientific tone of that GoFundMe page.   To be clear, I don't know a thing ...

I know the event is over but I just ran across this and I want to get it shared for future reference.  Can anyone identify the source and/or author (without Googling)? Forgotten Heroes   I'm thinking of a particular type of medical worker. ...

So today marks our first podcast episode. Healthcare Goals is a podcast about the future of healthcare, if you've got 45 minutes give it a listen. We go over a patients story about her experiences with chronic Lyme disease, then relay it with our special ...

Well Kathy you certainly helped expand those perimeters, thankyou! Hopefully out of everything currently out there, we can wedge it into a EHR compatible communication tool! I'm going to heavily look into all of that. What do you think is the best way ...

Hi Danny, There are numerous Pain Diaries/Journals/Planners available and can be downloaded via a simple Google Search. Some are excellent and enable chronic pain patients of which I'm one to better monitor their symptoms watching for changes. This works ...

Here is the page on that site for the chronic pain program http://www.eblcprograms.org/evidence-based/recommended-programs/chronic-pain-self-management I note that elsewhere on the site is a program called Enhance Fitness.  At my local YMCA I'm just ...

Hello SPM community! My name is Amber, better known as @wheezynurse on Twitter, and I am taking over as the Social Media Lead for SPM. ​In an effort to promote current member engagement in the preparation of this year's #SPM2018 conference in Boston, ...

I should add that one of the things that first drew me to join SPM was the resource of its members in helping me find and assess new information, and re-evaluate the 'truth' of old information and my assumptions based on that old information.  I still ...

Sandra, Thanks for making the distinction between provider-provider and provider-patient data transfers versus secondary uses of data. I just wrote a thoughtful response to this thread, but Connect swallowed it before I could hit send. (Reminder to ...

Join us on August 22nd, 2pm EDT as we hear from a dynamic group that will share their personal stories, and put a spotlight on how to turn stories into action. Register here! Patient Speakers: Chris ...

Please share this with any friends or colleagues in Chicago who might be interested. -Geri https://www.eventbrite.com/e/september-chicago-participatory-medicine-meetup-tickets-48894995247 Eventbrite September ...

Thanks so much Mark and Talya! I'm glad it's resonating.  I also want to mention, the materials we're creating and testing with patients and family caregivers will be made freely available to all hospitals and clinics. So once they're live, I'll let ...

Grace, I would have loved to participate in this as I have clients at MSKCC who are doing trials, but I will be away that day. Let me know if I can help in any other way. FYI, I don't think I can get my clients there for a variety of reasons, most notably ...

@John Grohol , I'm delighted to see you weigh in here. This was my first time at an Alternatives conference - Corinna had invited me a couple times in previous years, but the scheduling never meshed with my calendar. This time, however, it was a "gotta ...

Here's the link to the blog post with details - think of whom you want to nominate (including yourself), and spread the word on social media!   "Socializing it," as they say, is important, because one major purpose of an award process like this is the ...

Look forward to seeing you, and the rest of the crew, there. ------------------------------ Casey Quinlan Mighty Casey Media LLC | Host/Producer "Healthcare Is HILAROUS!" podcast Richmond VA 804-467-5716 ------------------------------

Hello Mark, Welcome, although I just recently joined SPM myself. The SPM community has been valuable to witness, as experienced and knowledgable individuals offer up out-of-the-box thinking on a variety of subjects. I'd like to (selfishly) ask to chat ...

Thank you, Peter. That is extremely helpful. Leslie ------Original Message------ This is a good question and illustrates the fact that we do not have a 'no-fault' approach to quality improvement in medicine. Ideally, clinicians and institutions ...

If you are an engaged patient (e-Patient) living with a serious or chronic illness and you also have a well-developed social media presence and an established relationship with a disease-specific advocacy organization, we invite you to take part in an ...

This is something I have wanted SPM to do since I joined (May 2010) and was frustrated that the rich information shared by members in the ListServ was impossible to find and use. The desire to have member-based crowdsourced information in a tool that ...

Hi everyone, Glyn Elwyn and I published several papers together. He's the world's leading researcher on shared decision making, and I'm happy to connect with him re-feedback. I wonder in what capacity SPM can help - is it usability testing, of sorts, ...

Mea culpa, @Brennen Hodge :-)  ​ ------------------------------ 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 john.hoben1 ...

I've just asked some questions in the Organizations and Partnerships discussion that I'd love to have as much membership participation in as possible. Please join that community and join the discussion! In theory, the following link should get you there ...

Hello, Last October a special interest group on family/informal caregiver research at the international conference on health communication. A small team from that SIG, who also happen to be SPM members, has created a brief survey to better understand ...

The 2018 Patient-Centered Clinical Decision Support Learning Network Annual Meeting, Leveraging Patient-Centered Clinical Decision Support: Addressing the National Opioid Crisis and Beyond, will be held on October 15, 2018, at the Hyatt in Crystal City, ...

Interesting article from today. @Tom Rivers , what are your thoughts?  https://www.healthcareitnews.com/news/idc-and-gartner-blockchain-what-cios-should-be-doing-now Healthcare IT News IDC and ...

Will connect with Susan to discuss next steps. Thanks all.  Jim Skinner ------------------------------ James Skinner Smart Patient Academy New Braunfels TX 8888224770 ------------------------------

From the member announcement that went out last week: Announcing our bi-monthly SPM Virtual Town Hall Vera Rulon and Michael Millenson will start with a brief update on SPM's Advocacy and Policy Initiatives.  Then it's your turn - open mic! ...

Good input, @Peter Elias - thanks for that JAMA piece, @Adrian Gropper .  @Brennen Hodge , please take note as it relates to http://CitizenHealth.io Citizen Health Citizen Health | A Decentralized ...

AnnMarie, love this HBO report. You're my latest patient advocate hero along with Karen Vogel in the video, Trisha Torrey (also in the video) and so many within our SPM=S4PM midst, including @Grace Cordovano .  Would someone please reach out to Karen ...

Sure thing - here you go! Help us understand the impact informal/family caregiving has on # nurses when they care for their own families & the impact on nurse managers & organizations that employ nurses: https://participatorymedicine.org/nurse-survey ...

Yes, I think that SPM's comments and Patient Privacy Rights' comments on the proposed Centers for Medicare and Medicaid Services (CMS) proposed revisions to FY19 payment are close. We both agree that patients should have immediate electronic access to ...

Yes as always. - Danny Daniel Z. Sands, MD, MPH +1-617-256-4775 Danny@DrDannySands.com Twitter @DrDannySands http://www.DrDannySands.com ------Original Message------ ​I registered, but I'm not sure I'm going to be able to participate ...

Here's one person's (Benjamin Krause) perspective:  https://www.disabledveterans.org/2018/07/09/die-another-day-va-releases-state-level-veteran-suicide-data/ DisabledVeterans.Org Die Another ...

Shout out to @Danny van Leeuwen for his latest blog: https://www.health-hats.com/the-culture-of-participatory-research/ Danny van Leeuwen Health Hats The Culture of Participatory Research My recurring ...

Shout out to fellow SPM member @Liz Salmi who will be presenting at this month's Health Records Banking Alliance (HRBA) meeting Thursday, 17 July. Here's Liz' biosketch (for more info on HRBA, contact fellow SPM member, @Richard Gibson ): Liz ...

Hi folks, Are you interested in helping out with the Society's accounting and membership services? I'm looking for a dedicated individual who has an inherent interest -- and time! -- in working with financials and helping me out with creating reports ...

It's that time again! We will be having our regular bi-monthly Virtual Town Hall meeting. When:  Tuesday, July 17th, 2018 from 7:00 pm to 8:00 pm ET (the third Tuesday of odd-numbered months). Where:  Online with two options for participation: ...

Thanks for asking John! From my perspective, I absolutely love the Empathy & Innovation conference. It deeply resonates directly with the work that I do as an advocate working with people who have cancer. I find the stories of how empathy changes patient ...