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Susan, thanks for the heads up.  We are working on strategic initiatives, and I don't know that rare disease is going to be the first priority, but we'll keep that in mind.  I'm so grateful to be informed about opportunities for funding. ------------------------------ ...

Hi Robert - let me check with @Josephshen and @RayWeadock as they may have someone in their networks.  John​ ------------------------------ John Hoben Lifetime Member Society for Participatory Medicine (SPM) https://www.linkedin.com/in/johnhoben hoben.john@gmail.com ...

Three page summary attached. ------------------------------ 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 ...

Fair question. No guarantees, of course, but I think two things can help: CLEARLY label it as a work in progress or draft. Make sure that your organization has an agora where this is an understood cultural norm, so feedback is intended and received ...

Healthy skepticism is what has brought participatory medicine to the forefront of our advocacy for many of us. Brenda PCORI could certainly do more to advance patient centered care and outcomes and working with patients, families and caregivers at all ...

In one of my FB groups, someone mentioned that she had been bitten by a puppy. She was asking about how members of this group handled bites.  I wrote back to ask if the puppy had been vaccinated for rabies. My point being, if it hadn't, or if she didn't ...

@Janice Tufte I should have been clearer when I suggested the stipend. It was my idea to suggest the stipend and so everyone knows, I did not consult you before proposing it. It just occurred to me that this is the kind of work that SPM should support.  ...

I understand, John. And the rationale for not allowing comments on news article seems reasonable to me...though as you said, allowing one class of individuals to comment but not other classes is not kosher.  That said, I would point out that while some ...

Hello all! My nascent organization will be hosting the TakeEMBack (take Emergency Medicine Back) Summit 100% virtually September 27th-28th 2021, FREE to Patient-Advocates and SPM members! Thank you to @Geri Baumblatt for introducing me to some incredible ...

Greetings SPM  Nice to be on the forum again!  I wanted to share with you all some of the activities I have been involved with.  I have been very active with the Computable Publising  FEvIR Platform developing out human readable evidence related ...

Marilyn Interesting wording to say the least. It appears they might have a goal of patients to pay up front "to ensure access to care" Hmmm ------------------------------ Janice Tufte Patient Partner @Hassanah2017 Seattle WA https://janicetufte.com ...

https://www.eventbrite.com/e/chicago-society-for-participatory-medicine-september-meetup-tickets-170219837115?ref=eios Hello, s4pmers! Chicago group has a virtual meeting coming up and please RSVP. Local Health Rosetta advisor Michael Kroupa and patient ...

Beth, it’s an emotional issue for me, too. I know a few women who have had abortions, and it was a gut-wrenching decision for them. It wasn’t easy. Perhaps for some women it is, so they do it with a light heart. But the ones I know who’ve done it have ...

from SPM Members @Eran Kabakov & myself:  Join us Sept 15 for a free webinar with Dr. Rebecca Sudore as she discusses her research behind advanced care planning and medical decision-making for all! https://us02web.zoom.us/webinar/register/9016282902466/WN_a1hzEgieR26xN7kNT8ufxg ...

I am sorry to have to miss this - I will be in the Northeast Kingdom of Vermont with family that entire week without reliable internet. I assume it will be recorded and link provided for those of us who cannot attend. Thanks. ------------------------------ ...

Fellow Participatorians,  In the spirit of transparency and open communication, Interim Board Chair, Mary Hennings, provides an update on SPM board topics for inclusion in the monthly newsletter, The Participatorian. There is commonly far more going ...

Hello, I'll be participating in the virtual HCEA Conf on Patient Education Virtual Conference in September. The conference is free to students and just $99 for all others - so please share with your networks, especially any students who may be interested: ...

Hi Beth, Sorry you can't make it, you will be missed. Although, I guess that means I can put my suit back in the closet! Yes, The Town Hall will be recorded and posted to Connect soon after. Brian -- Brian Mack E-Mail: brianmack626@gmail.com ...

Hi Vera, This is great news. I just wanted to thank you for all of your hard work in helping with the advocacy of participatory medicine. It's good to see SPM among so many other organizations supporting telehealth reform. Best, John

Thanks Robert,  That is a perfectly reasonable and achievable solution. I will take your suggestion and provide a brief opening to these board update messages( or any other content I may be posting on another's behalf) moving forward.  Regards,  Brian ...

Having medical insurance is not guarantee that your care will be covered. Raise your hand if this has been an issue for you? It has for me, for sure. And for countless of my patients. Here is a very nice article on No Patient Left Behind by Deborah ...

This is a very important and enlightening discussion. Thank you for sharing the ebook, and for your work Janice and Michael. Also, great idea for some of our clinical leaders to write for the NEJM Catalyst. Another candidate is Jan Oldenburg, who wrote ...

The idea of becoming "empowered with transparency and humility" is novel. Our culture often gives power to those who "never apologize never explain." ------------------------------ Robert Becker Humaginarium LLC Oak Park IL 3127887719 robert.becker@humaginarium.com ...

Agreed. My nurse and I had a handout we gave patients with some information and resources. In the pre-internet, pre-Dr. Google days, I developed a great relationship with the medical librarian at my institution and was able to refer patients and families ...

I will try to check into the pricing transparency of my local hospitals in a couple of weeks. Add it to my "shuck-it" list.  Another issue related to price transparency going in, is cost transparency coming out again.  An MD on the west coast wanted ...

@Peter Elias Thanks for sharing this event. A great approach to participatory medicine -- combining participant sharing with the input of a cardiology specialist. The registration is full but they will host more. Beth​ ------------------------------ ...

Hi all - I may have missed a note regarding SPM members getting together at HIMSS August 9-13th?  Is there a formal event, or should we determine a good time to gather for those attending?  And, I believe there was a registration code that was shared ...

Check out the SPM blog and share with your network. We have been posting new content weekly. This week a Northeastern alum summarized the results of a Capstone project in which he discusses how technology can accelerate the adoption of participatory medicine ...

I was asked to speak to a group of Nursing students a couple of years ago. The theme for the series was "Patient Safety" so I included "live interaction role-plays” with my husband that focused on the need for compassion as part of the Patient Safety ...

There's a nice article that has some background information about the Cures Act (that makes sharing clinical notes with patients a legal requirement) and some practical tips for using shared office visit notes in palliative care. Our own @Liz Salmi ...

I happen to have republished a blog about change/improvement: https://medium.com/i-am-cheese/why-the-change-you-want-to-see-in-the-world-has-to-start-from-you-df342dfbded0?sk=6424f76e1623e05c026ae042d7d856ed The link above is without paywall FYI ...

In terms of making it possible, encouraging him (and as many others as we can) to share his story here and then encouraging members to talk to him and each other, here or with other tools... ------------------------------ Every good deed is worth doing. ...

@Jay Spitulnik So sorry to hear about your granddaughter. I know you asked specifically about referrals for practitioners at Children's National Hospital. Let me also make sure you have thought about reaching out for other resources. To start, let me ...

Good article. I must admit to a bit of jaw-dropping, that this is considered a brave new experiment, but…. When I was in cancer treatment, I took a fluoroquinolone for a few days after every infusion, to prevent my becoming febrile as I became neutropenic ...

A member was kind enough to forward me their copy of the June Participatorian just now. The 'announcement' was a graphic and link at the bottom of the newsletter: ------------------------------ Every good deed is worth doing. Peter Elias Lifetime ...

Thanks, Elizabeth. Your story about the friend with the hernia repair…scary! To think he almost used a surgeon who had proved himself/herself incapable of the task, yet again! Yikes! But the fact that you drew a SRO crowd for your talk to the nursing ...

Addendum to my recommendation of An American Sickness. Kaiser Health News, which employs the author, has a weekly podcast named What the Health? I started listening after reading the book and found it very informative and engaging. It's a roundup and ...

https://docs.google.com/spreadsheets/d/1HNOV1PiT0IN0qup9RZGdTbFulZAeOibp/edit#gid=1827648262 ------------------------------ mary hennings concord ma 978-369-2759 ------------------------------

Great idea! We need more of this. As a long-term caregiver who's been caring for my spouse of 30 years through numerous health crises and hospitalizations, I'd love to see us caregivers included in the conversation. We tend to end up bridging the gaps ...

While I can't speak for the board, I can pretty assuredly say that the board has never placed ultimatums on our membership and we understand that people come to the Society for a multitude of reasons, looking to get sometimes very different things from ...