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Brenda, Clearly Congress and the Office of the National Coordinator for Health Information Technology have the intention that providers shall never charge patients for the *electronic* download of their data. Depending on what data you specify that ...

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 ...

---------- 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 ...

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) ...

I agree with you that government and clinicians have different incentives, and can frustrate patient goals IF they are included in a patient innovation system. My suggestion is that SPM need not engage with them. You are free to "just do it” and innovate ...

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 ...

While we don't (yet) have a comprehensive and curated repository for things like this, I disagree strongly with @Danny Sands that we do not have a way to share these things currently. This is not a technical barrier, it is a cultural and attitudinal ...

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

Thanks for the shout-out, @Dave deBronkart - I had a team of folks that made the first year+ newsletter a success, not the least of which were behind the scenes people like @Nanette Mattox who was on TV recently in Cary, N.C. Turns out one of Beryl ...

> 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 ...

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) ...

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 ...

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

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 ...

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 ...

Good post, Grace.  I've just finished Eric Topol's new book  Deep Medicine , easily the best publication I've read about it: interesting, sane-sounding, no apparent agenda to hype things for commercial purposes - utterly unlike the often-overly-thrilled ...

All, what can we do to be a presence online and/or in person in September? Here's the list of SPM initiatives, from the society's About page https://participatorymedicine.org/about/committees/ ... @Vera Rulon  heads Advocacy - Vera, any thoughts on ...

Thank you so much! This is wilddddddd!! As we crossed a million, I was on the phone badgering a hospital official in Dallas to cough up their prices. Nothing like some journalism to celebrate!  We will have another big announcement soon, so stay tuned.  ...

Ken, plagiarism is a crime that is little-punished. The demographic most likely to get their hands swatted are students. Once you leave that context, however, it is a virtually punishment-free strategy for increasing one's productivity. I've seen department ...

Thanks, @Danny Sands . Happy to help out with getting SPM's governance foundation and structure is in alignment with the society's future growth plans. @Dave deBronkart ,  this work is taking place because SPM has outgrown the bylaws that it approved ...

Hi @Denise Brown - good to meet you.  I don't have anything to add about your event, but I want to note that we (the SPM members - I'm no longer on the board) may want to think about the particular needs of caregivers. I know that some of our most ...

That's amazing - 30 years of research etc, broad staff, and who's ever heard of them??  People:  https://dsgonline.com/dsgs-people/ Their home page has a clue: Development Services Group, which is evidently tied to international development and terrorism. ...

http://bit.ly/AprilPEblog Patient-experience When Your Own Health is the Best Medicine for Patients Monday, April 01, 2019 Tags: Geri Lynn Baumblatt & Shiv Gaglani Clinicians and professional caregivers aren't ...

How many of us are members in Savvy Co-Op founded by Jen Horonjeff, a fellow SPM supporter?  https://www.savvy.coop/membership Patient Experience | Savvy Cooperative Co-op Membership | Savvy ...

@Matthew Fisher - many thanks for volunteering. @John Grohol has been a backbone to this committee and a wonderful asset. Thanks for considering helping.   ​​ ------------------------------ John Hoben Lifetime Member Society for Participatory Medicine ...

It was great to meet you F2F!   I wish we had indeed created an SPM meetup!  Sorry I was so wrapped up when you said hi - I turned around later, looking for you. ------------------------------ Dave deBronkart e-Patient Dave LLC SPM co-founder and past ...

Thanks for pitching in yet again, John.   If she hasn't responded, you might try the email address she proposed. ------------------------------ Dave deBronkart e-Patient Dave LLC SPM co-founder and past co-chair Co-admin for SPM Connect Nashua NH - ...

That's terrific - thanks, Anna! ------------------------------ Dave deBronkart e-Patient Dave LLC SPM co-founder and past co-chair Co-admin for SPM Connect Nashua NH ------------------------------

I can't attend the event, but i have heard a lot of good things. Look forward to hearing from the folks who were able to make it! ------------------------------ Brian Eastwood ReviveHealth Arlington MA iambeastwood@gmail.com ------------------------ ...

Thank you, Danny! Looking forward to expanding my role with the SPM and working more closely with members. Please don't hesitate to reach out. --Brian ------------------------------ Brian Eastwood ReviveHealth Arlington MA iambeastwood@gmail.com --- ...

As some of you know, I'm on the faculty at Harvard Medical School. They are offering an online course  on Shared Decision Making. It's aimed at clinicians, but others may also find it interest. Questions should be sent to Elizabeth Bennert , associate ...

Good stuff, @Susan Woods - thanks for sharing.  What do Rachel Grob and the other authors know about http://PatientWisdom.com and its numerous very successful implementations, especially at Froedert, @Gregory Makoul ?  ​ ------------------------------ ...

------------------------------ Geri Lynn Baumblatt, MA Patient Engagement, Health Literacy, Shared Decision Making, Family Caregiver at Large in the Multiverse Chicago, IL gerilynn@mac.com | @GeriLynn ------------------------------

My favorite ENT (the only one I know in real life) is the kiwi ​ @David Grayson , aka @Sasanof on Twitter. And you BET he's woke! Totally totally one of us! ​ ------------------------------ Dave deBronkart e-Patient Dave LLC SPM co-founder and past co-chair ...

Thanks for doing that extra research, Dave. I read the recent article on patient participation, but maybe the site had different URLs and I grabbed the wrong one. ------Original Message------ Great to see you, Andy! First, I had no IDEA there's ...

Propagate the info about the study on patient-centered platforms, such as Patients Like Me, FB disease-specific groups, etc. But I'm sure you've already thought of that one.   Can you drum up any media interest in the study and get free exposure that ...

I have renewed - and to avoid future embarrassing lapses I have renewed for life. Look forward to stepping up and engaging with the Society! ------------------------------ Brian Eastwood ReviveHealth Arlington MA Iambeastwood@gmail.com ------------- ...

I have such mixed reactions to this video.  First, I'm glad it's honestly  infuriating  to me that anyone working in healthcare would need to have  any  of these things pointed out to them. I almost want to cuss.  But, on the other hand, anything that ...

Mass Health Quality Partners (MHQP) is hosting a webinar to introduce FAIR Health, an independent, nonprofit organization with a mission to improve understanding of healthcare costs and health coverage and to bring transparency to healthcare costs and ...

Anyone have first hand experience with this device? https://www.cnet.com/google-amp/news/omron-heartguide-my-life-with-a-blood-pressure-smartwatch/ CNET Omron HeartGuide: My life with a blood pressure smartwatch ...