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Final weeks: Register & attend Regina’s “Partnership WITH Patients” conference

By  | August 30, 2012
Categories: Patient/Doctor Co-Care|Patients as Teachers|Positive Patterns|Why PM

Yes, “Regina” – you know who I mean.:-) You know someone’s a star in the firmament when they gain first-name status. (Especially in healthcare, where “the other Regina” happens to be Surgeon General!)

As we reported here in June, Regina Holliday has led a band of patient colleagues and professional partners in creating this event, hosted by EMR vendor Cerner, to train and develop patients’ skills as effective advocates and related topics.

This is as grass roots as it gets – please support it,
as I am, personally, with time and cash.

Also, SPM is providing the infrastructure
for tax-free donations to support patient travel.

Summary of links below:

Tiny donations are welcome – bigger ones too. I believe in this event so much that although my own start-up speaking business hasn’t reached break-even yet, I’ve donated $1,000 so far.

My thoughts

Next month dozens (we hope hundreds!) of us will gather in Kansas City at Partnership With Patients. Marketers often call an event “extraordinary,” but this is extraordinary: have you ever seen anything like this?  It’s a conference for, about, and created by patients, with no big institutional funding, entirely grass roots. Register to attend or sponsor.

The term Partnership With Patients is essential here: as Regina told on her blog in June, she was on a webcast in May for the CMS Partnership For Patients program, and it was way off target – the very word “for” connotes paternalism, even if it was unintended. As she tells in that post, the patient voice pretty much hijacked that call – and in the next 22 days she and a band of activists created this event from scratch.

(I wish everything the Society for Participatory Medicine did was so fast and effective!  But we have a board, and somehow that gets in the way of things happening fast. Here’s hoping we can change that – and meanwhile, here’s to the patients who don’t wait.)

That’s all you need to know; below is more background info, if you want. But it’s all in the links above.

Please support this, as I am and SPM is. 
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A clip from her post yesterday:

The Partnership With Patients Summit:

The first patient summit in Kansas City supported by crowd-funding, designed using social media with art by Regina Holliday

Patients, Providers and Health Professional from all over the United States will convene in Kansas City, Missouri, from September 21through September 23 to present speeches on Health Information Technology, Patient Safety and Quality and Media and the Message of Patient Advocacy.

For too long patient input has been an afterthought in health policy.We are changing that.

This summit focuses on education, networking and partnership—of patients, providers, venders and explains the relationship between government policy and patient advocacy. Conference attendee’s will suggest ways to promote patient participation, learn about the effect of change and growth in the tech sector on patient advocacy, and use social media to further the voice of the patient in national health policy.

What makes this a must attend event?

The conference hashtag is #cinderblocks on twitter
The Facebook group is https://www.facebook.com/groups/295223483902051/?bookmark_t=group

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The incredible story of how this was created in 22 days, from Regina’s June 14 post:

Recently, I wrote Pecking Order, a post recounting a webinar call on May 22nd between patients, a contracted PR firm and CMS officials. The call was supposed to be a collaborative webinar session replacing an in person patient summit due to severe restrictions on federal travel. Sadly during the call patients did not have much time to speak. That changed an hour and a half in, when I spoke out. The patients took over the call and spoke about our views on the CMS funded initiative Partnership for Patients.

It became a call to action.

In the 22 days hence we have done quite a bit.

On May 22 we grabbed the domain name for Partnership with Patients and began the facebook group. At this point there are over 300 members in the facebook group from every field of healthcare: patients, nurses, programmers, doctors, venders, transcriptionists and lawyers.

On May 23rd I posted Pecking Order.

On Thursday May 24th I spoke with Kathleen Siedlecki on the phone. I encouraged her and her team to attend Mark Scrimshire’s Healthcamp on June 4th in DC.

On Friday May 25th I spoke to Dennis Wagner, co-director of the Partnership for Patients Initiative. He apologized about the direction the webinar had taken. He also said he would be joining the Walking Gallery. I told Dennis we planned to crowd source patient ideas for how to best promote this patient safety agenda. We scheduled a meeting with the P4P team at CMS offices on June 13th.

Over Memorial Day weekend, Kathy Nicholls, CMT, AHDI-F, Certified Inbound Marketing Professional, was hard at work volunteering her time to build the Partnership With Patients Web Page. We bounced emails back all weekend. I also spoke with advocates such as Helen Haskell and Julia Hallisy by phone. Many of the advocates like Martin Hatlie, Pat Mastors and Amy Berman, that were part of the original call emailed back and forth throughout this time and in a spirit of sharing I looped the whole PR team into the email thread. I got Out of Office replies from them all.

It was a holiday weekend, but for many advocates this is more than a job, it is a mission that we ply 24-7.

By May 31st the Partnership with Patients webpage was up.
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Again, those links:

 

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