FiDA Failed Implant Device Alliance: Partnership WITH Patients Summit

Joint replacements are the #1 expenditure of Medicare. The process of approving these medical devices is flawed according to the Institute of Medicine. It is time for patients' voices to be heard as stakeholders and for public support for increased medical device industry accountability and heightened protections for patients. Post-market registry. Product warranty. Patient/consumer stakeholder equity. Rescind industry pre-emptions/entitlements. All clinical trials must report all data.

Please share what you have learned!

Twitter: @JjrkCh

Tuesday, July 10, 2012

Partnership WITH Patients Summit

LINK

http://partnershipwithpatients.com/

http://partnershipwithpatients.com/blog/

Partnership With Patients Summit

Friday, Sept 21, 2012 at 6 PM - Sunday, Sept 23, 2012 at 4 PM

Kansas City, MO

Event Details

This conference is two-fold in its mission. We will be working on strategies for a grass roots support the Partnership for Patients campaign. We will also help enable patients by providing a place to network, learn and grow as patient advocates that focus on health policy. You can read more about this on our website

Partnership With Patients

The funding model for this event is the STONE SOUP method. Please give what you can and take from this event the energy you need.

We have no federal funding and no grants. Cerner has graciously agreed to provide the space for our event in their educational building. The Society for Participatory medicine is our non-profit partner. They have agreed to create a Patient Travel Scholarship Fund. They will accept donations for this purpose and will issue grants. The hope being that this fund will grow beyond this one event and help patients attend other conferences in the future.

We are looking for sponsors to help defray overall costs as well as providing scholarships to patients for travel and lodging. This summit will be a moment of true cooperation with venders, organizations, providers and patients all coming together to advocate for positive change. If you purchase a ticket here it covers attendance at this conference on Friday night, Saturday and Sunday. You will need to make travel and lodging arrangement in addition. A block of rooms have been reserved at

The Marriott Downtown Kansas City

200 West 12th Street. Kansas City, Missouri 64105

Please call 1 (816) 421-6800 to book your room at the conference rate.

Agenda:

Attendees must attend at least one session in all three tracks

September 21, Friday night would be a meet and greet with a few speeches. Gathering of #TheWalkingGallery Light refreshments.

September 22, Saturday begins with breakfast in exhibition space, Opening Keynote, Panel Presentation from the Society for Participatory Medicine, 4x4 presentations from our sponsors, break outs in multiple tracks with different levels of information :ie 101 level, 102 level…

Attendees must attend at least one session in all three tracks

Track 1: HIT/Health Policy

Meaningful Use/ Cerner Experience Theatre/ ACO/HIE/ Blue Button/ Patient Portals

Track 2: Patient Quality/Safety

Paticipatory Medicine, e-Patients, End of Life Care, Palliative Care, Healthcare-Associated Infection, Types of Medical Harm, Adverse Events, Safety Concerns About the Electronic Medical Record, History of Patient Advocacy, Partnership for Patients, Quantified Self, Gamification

Track 3: Media and the Message

Social Media/Activism through the Arts/ Public Speaking/

Evening: Ignite format speeches

September 23, Sunday: Two tracks

Healthcamp unconference

Honing your message: for the patient speaker who needs more experience and for mentors who wish to help them!

Funding/Tickets:

Sponsorship levels:

Diamond Cinder Block 5,000 level

Regina Holliday will create a 24x36 canvas during 2012/2013 Partnership for Patients campaign year for this sponsor

Recognized from the stage during opening keynote 4x4 Presentation

Limited edition print of conference painting

Admission for 1

Table in exhibition hall

Logo on our website

Logo on thank you signage

Golden Cinder Block: $3,000 level

Regina Holliday will create a 18x24 canvas during the 2012/2013 Partnership for Patients campaign year for this sponsor

Recognized from the stage during opening keynote

4x4 Presentation

Limited edition print of conference painting

Admission for 1

Table in exhibition hall

Logo on our website

Logo on thank you signage

Cinder Block Level: $1,000

Recognized from the stage during opening keynote

Limited edition print of conference painting

Admission for 1

Table in exhibition hall

Logo on our website

Logo on thank you signage

4x4 Level $500

Admission for 1

Table in exhibition hall

Logo on our website

Logo on our thank you signage

2x4 Level: $250

Admission for 1

Logo on our website

Logo on our thank- you signage

Partner Level: $100.00

Attendee who does not self-define as patient

Patient Level: $50.00

Attendee who does self-define as patient

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Patient Advocacy Events

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9/18/2017-11/14/2017 $247 Million verdict. Federal jury trial J&J DePuy Ultamet Hip MDL Fourth Bellwether NY plaintiffs, daily observer
9/25/2017 Rally in Washington, DC for the Medical Device Safety Act HR
7/27-29/2017 Leadership Women National Conference, Dallas, TX
6/21/2017 HealthwatchUSA presentation: An Update on PREVENTABLE Medical Device Harm: Indemnity & Injustice
5/18-5/20/2017 Cinderblocks4 Partnership With Patients conference and Walking Gallery, Grantsville, MD
5/6/2017 Bayer Essure (sterilization coils) Harmed Patients National Rally, Dallas, TX
4/27/2017 J&J Shareholders Meeting, New Brunswick, NJ
12/2016 Consumers Union Safe Patient Project Summit, NY
Settled. RESET to 12/5/2016 from 9/12/2016 & 5/2016 & 1/4/2016 Figuero v Boston Scientific, pelvic surgical mesh product liability Dallas, TX
12/1/2016 $1 Billion verdict: J&J DePuy Pinnacle Hip MDL Bellwether Dallas, TX federal jury trial
11/4/2016 HealthwatchUSA conference, Lexington, KY
Now postponed: RESET to 8/15/2016 from 6/3/2016 Mesh Awareness Movement rally 8am to 11am Edwards v. Ethicon Robert C. Byrd federal courthouse in Charleston, WV
6/3-4/2016 Advanced Patient Advocacy Workshop, National Center for Health Research, Washington, DC
5/19-21/2016 Cinderblocks3 Partnership With Patients conference and The Walking Gallery in Grantsville, MD
Date RESET:TBA 4/11/2016 (postponed) Rally in Charleston WV at federal courthouse. 86,000 surgical mesh MDL trials.
3/17/2016 $502M verdict Johnson & Johnson DePuy Pinnacle hip replacement trial in Dallas federal court
2/1/2016 to 2/4/2016 CU Safe Patient Project Summit in Washington, DC
11/13/2015 HealthWatchUSA conference in Lexington, KY @heathwatchusa #HWUSA15
10/21/2015 U.S. Congresswoman Eddie Bernice Johnson (TX-30), Dallas, TX
10/6-10/8/2015 PCORI Annual Meeting, Arlington, VA
9/21/2015-10/5/2015 Cavness v. JNJ Ethicon Prosima surgical mesh trial, Dallas, TX
6/4/2015-6/6/2015 #Cinderblocks2, The Walking Gallery, Grantsville, MD
5/4/2015 and 5/5/2015 Join EssureProblems Rally at the ACOG conference and Bayer headquarters for a rally, San Francisco and Berkeley, CA
1/19/2015 Author John T. James, PhD "The Truth About Big Medicine" Dallas, TX
11/11-13/2014 Consumers Union Safe Patient Project Summit in Yonkers, NY
11/7/2014 HealthWatchUSA conference in Lexington, KY
8/25-9/8/2014 $73M verdict, Salazar v Boston Scientific Obtryx surgical mesh - court observer
6/8-10/2014 Leadership America in Berkeley, CA
5/21/14 HealthWatchUSA webinar with guest presenter Dr. Tom Valuck
4/29/14 WFAA TV interview with Janet St. James regarding FDA announcement of reclassification of surgical mesh to "high-risk".
4/16/14 Mesh Warrior Foundation
3/24/14-4/3/14 Batiste v McNabb/J&J Ethicon jury trial, Dallas TX, plaintiff awarded $1.2M compensatory for defective MCM TVT-O surgical mesh
3/11/14-3/13/14 AAOS conference, New Orleans LA
11/5/13 Consumers Union Safe Patient Project at Columbia University School of Journalism NY,NY
11/1/13 Speaker at HealthWatchUSA, KY
10/17/13, TMIT webinar Unaccountable – The Latest from Dr. Marty Makary AND New Critical Issues for Patient Safety Leaders
9/27/13 Stanford Medicine X
9/18/13 AND 9/19/13 FDA Workshop/Webinar on Patient Preference and Medical Devices TMIT webinar Transforming Healthcare Leadership and Patient and Family Engagement
091113 CMS Deputy Chief Medical Director, Dr. Shari Ling/HealthwatchUSA
9/10/13 and 9/11/13 Mayo Social Media Residency in Dallas/Baylor
8/21/13 Health and the Built Environment webinar (ReportingonHealth)
7/29/13 PfP CMS Affinity Group webinar
7/9/13 The Science of Safety in Healthcare/Johns Hopkins/Coursera
6/13 & 14/13 PCORI Merit Reviewer
6/13/13 FDA 510(k) Public Meeting webinar - 5 minute presentation
06/10/13 CMS Partnership for Patients webinar Product Safety and Resource Management Group Meeting
4/15/13 screening of Regina Holliday's movie '73 Cents' in Austin TX
4/5/13 ProPublica #MedErrorsChat
3/18/13 Dallas #HCSM (Healthcare Social Media) Dallas meet-up prior to The Future of Information-Driven Healthcare webcast (Dell)
2/20-22/2013 Selling Sickness 2013, Washington, DC
1/29/13 University of Texas/Austin QUEST Lifelong Learning: Lana Keeton lecture "Think you are Protected? You're Not. What Doctors Don't Know & FDA is not Telling." Failed Vaginal Surgical Mesh Implants
11/12-14/2012 Consumers Union Safe Patient Summit
10/27-28/2012 PCORI Patient-Centered Outcomes Research Institute (applied/not included)
10/15-19/2012 Mayo Social Media Summit, Rochester MN (webinar-not awarded competitive scholarship)
9/21-23/ 2012 Partnership WITH Patients and HealthCamp, Kansas City MO --
6/4/12 The Walking Gallery (Regina Holliday) Washington, DC
4/26/12 Steven Baker - MN staff of Senator Al Franken
2/6/12 to 2/9/12 Capitol Hill to lobby with Consumers Union Safe Patient Project, visit PCORI
11/19/11 Leadership Texas Annual Meeting workshop - presenter on health and wellness advocacy - San Antonio
11/15/11 Senate HELP testimony: Steven Baker
10/24-26/11 CU Safe Patient Project Summit - Yonkers, NY
9/25-27/2011 Health 2.0 SF conference
9/22/11 FDA/CDRH Town Hall testimony, San Francisco CA
3/10/11 FDA/CDRH Town Hall testimony, Irving TX
1/13/2011 FDA MDUFA (invited but restricted from participation)
09/23-24/2010 FDA/CDRH Patient Representative Workshop
06/09/2010 Consumers Union Activist Summit DC
08/04/2009 Alliance for Justice: Medical Device Safety Act hearings

Tuesday, July 10, 2012

Partnership WITH Patients Summit

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