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Wednesday, September 19, 2012

Partnership WITH Patients


The Partnership with Patients Summit Sept 21-23:
Kansas City Here we come!

The conference hashtag is #cinderblocks on twitter    

                                                        



Friday 21, The Walking Gallery: 6:00pm to 8:00pm
To begin this conference The WalkingGallery gathers on Friday night Sept 21, Kansas City Marriott Downtown 200 West 12th Street, Kansas City, MO 64105 light refreshments will be served

Twitter hashtag: #TheWalkingGallery

The patient voice — in the form of the Walking Gallery of Healthcare art event —will arrive in Kansas City as walkers from throughout the nation will display the stories painted on their backs of business jackets. Internationally recognized patient rights art advocate Regina Holliday will debut her latest works. 
  
After gathering at the Marriott we will attend the Plaza Art Festival at 4750 Broadway, Kansas City, Missouri 64112 in our jackets and spread the word about patient engagement.

Shuttle to Riverport facility leaves Mariott 7:00 am


Saturday 22, Registration begins at 7:30am
Cerner will host the Summit Saturday and Sunday at their educational facility at Cerner Educational Building 6711 NE Birmingham Rd  Kansas City, MO 64117
Coffee and breakfast will be served in the exhibition area 

Saturday Morning 8:00 am in room A  (this room we will record.)

8:00 Opening Comments: Regina Holliday




Regina Holliday is an artist, speaker and author in Washington DC. She writes about the benefits of HIT and timely data access for patients and families. She painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Regina paints and speaks at medical conferences throughout the world. Her work is visual reminder of the patient in the center of any policy debate and technical application. She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Her artwork has been in peer-reviewed journals such as the BMJ and APA journals. She recently wrote a book "The Walking Wall: 73 Cents to the Walking Gallery."  

8:30-9:10 The Society of Participatory Medicine

“e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one website said.
He received great treatment at Boston’s Beth Israel Deaconess Medical Center. His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.
An accomplished speaker and writer in his professional life before his illness, today Dave is
actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient.

Michael L. Millenson, president of Health Quality Advisors LLC, Highland Park, IL, is a nationally recognized expert on quality of care improvement, patient-centered care and web-based health. He is the author of the critically acclaimed book, Demanding Medical Excellence: Doctors and Accountability in the Information Age, and holds an adjunct appointment as the Mervin Shalowitz, M.D. Visiting Scholar at Northwestern University’s Kellogg School of Management. Earlier in his career, he was a health care reporter for the Chicago Tribune, where he was nominated three times for a Pulitzer Prize. National Public Radio called Millenson “in the vanguard of the movement” to measure and improve American medicine. In addition to work in health policy and strategy, Millenson has designed and implemented an Accountability Audit for hospitals, websites to help in consumer quality-of-care decisions and a joint doctor-patient program to improve communication during office visits. As a senior adviser to the Markle Foundation, he helped launch the Connecting for Health interoperability initiative. Prior to starting his own company, Millenson was a principal in the health-care practice of a major human resources consulting firm. Before that, at the Tribune, he was one of the first journalists to write about health policy issues for the general public and was recognized with an Alicia Patterson Foundation Fellowship and other awards. Millenson has written for publications ranging from the British Medical Journal and Health Affairs to The Washington Post, Kaiser Health News and Forbes.com, and he is a contributing editor to The Health Care Blog. He is president-elect of the Society for Participatory Medicine and also serves on the boards of the American Medical Group Foundation, the AHIMA Foundation and the American Journal of Medical Quality.
series of 4x4 presentations from sponsors 9:15-9:45
Intouch Solutions Bunny Ellerin


Bunny has spent the last two decades building healthcare companies and their brands across a number of key sectors: pharma, medtech, HIT, managed care and physician services. Most recently she was CEO of Ellerin Health Media, where she helped clients shape their digital, social and mobile strategies to successfully communicate with physicians and other HCP’s. Prior to running her own company, she was Managing Director at InterbrandHealth, a leading Omnicom-owned global brand consultancy, where she led the Research & Analytics division and spearheaded the firm’s efforts in the digital arena.

Bunny has worked closely with physicians throughout her career, becoming a trusted advisor on both business and clinical initiatives. Upon graduation from graduate school, she managed 14 specialty physician IPA’s (Independent Practice Associations)  in oncology, gastroenterology, urology, cardiology and orthopedics, where she negotiated and operated risk –based contracts with leading managed care organizations. She was then recruited her to help some of these same doctors create an educational platform for the dissemination of clinical content. As Executive Vice President of Clinsights (later acquired by PPD, a leading Contract Research Organization), Bunny launched several physician education websites including TCTMD, the first online community for interventional cardiologists. This is where she first witnessed the power of the Internet in influencing physician behavior.

Bunny graduated from Columbia University with a Bachelor of Arts in Political Science. She received her Master of Business Administration from Harvard University.

Pocket Health Joe Ketcherside


Brian Carter: What is a Patient Portal?

What is a PHR?
What is an HIE?
What does Automated Blue Button and #VDTNow mean? 

HIT and Policy

Session 1
10:00-11:45 am first group of 25 patients go on shuttles to experience theatre on Cerner Campus
Session 2
12:00-1:45 pm second group of 25 patients go on shuttles to experience theatre on Cerner Campus

Patient Quality and Safety Room A

Session 1
10:00-10:45: Pat Mastors and Partnership with/for Patients


Pat Mastors is a hospital patient advocate and former medical reporter committed to a range of initiatives that effectively put patients at the center of care. Her focus is the engagement of patients and their advocates, a group some medical experts call "the most under-utilized resource in health care". 

Pat’s patient advocacy began with the sudden hospitalization of her father in 2005, when a fall down the stairs required surgery. It was an otherwise successful surgery, but complications of a common infection called Clostridium difficile caused his death six months later. As his only daughter, and having acted as his health advocate during his hospitalization, Pat found this a life-changing experience. She launched an informational website about the risk of infection in hospitals, lobbied successfully to pass two patient safety laws in her home state (Rhode Island), and now works with patient and provider groups nationwide toward a common goal of greater patient engagement for better health.

For more than 20 years Pat was a television news anchor and medical reporter at WJAR-TV and WPRI-TV in Providence.  Her effectiveness as a speaker and presenter, her passion for patient engagement, plus her genuine empathy for the concerns of both patients and providers, make her uniquely effective at moving people toward common ground.

Pat serves  as a patient/family advisor to the U.S. Department of Health and Human Services “Partnership for Patients” Hospital Engagement Networks. She is the "consumer voice" on the HAI reporting steering committee for Rhode Island's State Health Department. She works with the Consumer's Union Safe Patient Project (a branch of Consumer Reports), and is on the Advisory Board to the Small Business Development Center at Johnson, Wales University.





Session 2
11:00-11:45: Patient Speakers and SpeakerLink Panel: 

Dave DeBronkart See Above,


Tiffany Peterson is currently a lupus ePatient advocate sharing her experience on life while living with lupus at TiffanyAndLupus and is the founder/community manager of Friends Against Lupus; an informative community of lupus patients, caregivers, and supporters. 


She has been an ambassador for the S.L.E. Lupus Foundation for about two years and is currently Chair of their Awareness Committee.






Kait B Roe 

Is a fierce patient advocate for patient centered care as found in Mental Health parity and integration into physical care. She has a specialty in LGBTQQI disparity and cultural competence. Kait is known best for her constant reminders that if it is CALLED patient centered, there BETTER be a patient sitting at the table- every table – yes, that one too! She is also known for her love of bacon...




Media and the Message Room B
(Social Media/Activism/Public Speaking)

Session 1 Intouch Solutions on Media 10:00-10:45



Doug Weinbrenner has spent his entire career bridging the gap of health disparities. He spent over a decade on the front lines of patient advocacy working with local, state and national nonprofit organizations and government agencies to better support and strengthen various patient communities; including mental health, HIV/AIDS and rare genetic diseases. In response to fewer patients coming to providers for information and services, Doug lead these various providers to a digital model that responded to and even anticipated patient needs. He continues this work today as Director of Social Media for Intouch Solutions, building bridges among patient communities, disease awareness and therapies.

Session 2  
11:00-11:45 Empowering Your Message:  The Human Technologies of Speaking and Bringing Your Message Forward

Katherine Cartwright Knodel, speaker and workshop leader, writer, empowerment coach, spiritual director, and transformational training designer, works with groups to help them empower the life and mission of their organizations and with individuals to heal and empower their lives. An ordained Lutheran pastor specializing in transformational ministries, she served congregations for 22 years and continues to preach, teach and consult.  She  is an instructor for Pennsylvania Diakonia, teaching two courses, Biblical Images of the Life of the Church and Communicating the Gospel, a columnist for the Bucks County Courier Times, and maintains a coaching and healing practice in Bucks County, PA. Her forthcoming collection of poetry and short stories, Claws of Uthurunku: Healing the Feminine will be out later this year and she is working on a new book, Opening the Heart of the Church: Empowering People for Compassion and Authentic Community. She has developed and leads a number of workshops, including Anthropology for the Soul: Excavating the Stories of Your Life and Empowering Church-Empowering Leader, a transformational training design that can be adapted for any spiritual community or organization. She volunteers with the SEPA Chapter of the American Red Cross as a Specialty Volunteer in Spiritual Care.  Her poetry and education page, Awakened Spirit, exploring the landscape of poetry, myth, and the fractured-expanding-healing self, can be found on Facebook. She is certified in Transformational Training Design and Empowerment Facilitation through The Empowerment Institute Training Programs.



Lunch
11:45-12:15

HIT and Policy Room C


Session 3
2:00-2:45 Roy Foster: HIT and Meaningful Use 101





Roy Foster comes from a long line of health care consumers.   Even before he earned his Bachelors of Arts from Ottawa University he had already had several encounters with the health care system.  Roy’s family medical history includes several chronic conditions such as adult diabetes, high blood pressure, congestive heart failure and even some mental disabilities. 
Today Roy serves the industry as a passionate believer that empowered consumers and the aggressive advancement in the utilization of health information technology will result in the fundamental changes needed in order for our country and our world to reach its fullest potential. 
Roy has spent the last 11 years helping health care organizations implement electronic medical records.  The last 3 years he has served as the Executive Director of the Regulatory & Compliance Practice.  In this role he led a dynamic of team of experts on health policy and organizational strategy.  By the end of 2012, close to 90% of all health care facilities using Cerner’s EMR will be meaningful users.  Roy is continuing his mission by taking executive responsibility for Patient Centered Medical Home strategies.     

Session 4
3:00-3:45 HIT Panel

Jim Hansen :

"Consumer/Patient Experience in a Transformed
 HIT-Enabled
Health and Health Care System

Jim Hansen serves as Vice President and Executive Director of the Dossia Consortium, a not-for-profit association that brings together major employers - including AT&T, Intel & Walmart - representing over five million employees, dependents and retirees to advance the use health information technology to improve the safety, quality and efficiency of health and health care for all consumers and patients.

Mr. Hansen possesses 30 years of information technology, strategic planning, product development, marketing, operations and finance experience including 20 years within the health care industry.  His journey in consumer/patient engagement began as a member of the Health Partners (Minnesota) team that created the innovative Consumer Choice System in 1994.  Prior to joining the Dossia Consortium, he was founding President and CEO of CareEntrust, an award-winning not-for-profit employer-sponsored health information exchange (HIE) delivering secure regional health record services for use by both consumer/patients and health care providers.

Mr. Hansen is actively involved with a consumer/patient perspective in a number of national health and health care transformation supporting organizations including the Institute of Medicine (multiple groups), ONC S&I Framework Transitions of Care workgroup, and most recently DirectTrust (a group developing a trust framework for Direct).  He was previously a long time working member of the Healthcare Information Technology Standards Panel’s (HITSP) consumer workgroup.

Mr. Hansen holds BS Business Administration (Information Management emphasis) and MBA degrees from the University of Colorado. 





Joe Ketcherside:  "Where do I put my damn data? Patient Portals and PHRs"


Joe Ketcherside, MD is an experienced medical informaticist and business leader with a strong clinical and industry background. He is the co-founder of Cognovant, Inc., a consumer health informatics company specializing in mobile, personal health record technologies such as their PHR platform, PocketHealth.
He also serves as the CEO of Ketcherside Group, LLC, an independent consultant to health systems and technology companies, providing strategic insight for technology adoption and product development.
Dr. Ketcherside practiced neurosurgery for 11 years in Kansas City, MO in a community practice as well as serving as Chief of Neurosurgery at the University of Missouri - Kansas City. After further education in the Software Architecture Department at UMKC, he left clinical practice to work with Cerner Corp as an engineer, physician executive, and product management director for physician systems. He subsequently worked at TheraDoc, Inc. as Chief Medical Officer and VP for Corporate Strategies.
Dr. Ketcherside then served as Senior VP and CMIO for Methodist Healthcare in Memphis TN, where he led their EMR and CPOE initiatives. He was also the co-director of the Biomedical Informatics Unit of the University of Tennessee Health Sciences Center Clinical and Translational Science Institute, which he helped to create. Following that, he was CMIO at Heartland Health in St. Joseph MO, and the Medical Director for the Lewis and Clark Information Exchange, a regional HIE. In all of these roles, he was responsible for system design, implementation and adoption across the enterprise.



"A Patient-Centered Learning Health System: What Our Health System can Learn from Us"




Josh C. Rubin
, JD, MBA, MPH, MPP, is the the Executive Director of the Joseph H. Kanter Family Foundation and Health Legacy Partnership (KFF). Josh brings to KFF not only energy and experience, but an evidenced strong commitment to KFF's mission. In 2009, KFF contracted with Josh's then-employer eHealth Initiative (eHI – a multi-stakeholder Washington-DC based nonprofit organization whose mission is to drive improvements in healthcare quality, safety, and efficiency through information and information technology) to have Josh conduct global research on international uses of electronic health records (EHRs) for outcomes research purposes; research that served as the foundation upon which KFF's international working meeting was developed, in collaboration with The Commonwealth Fund. As Josh learned more about KFF's vision for a Learning Health System (LHS), he not only articulated his belief in KFF's mission, but volunteered hundreds of hours of his time and expertise over to serve as an advisor, to build partnerships and seek out new opportunities for KFF, to conduct research, and to refine and advance KFF’s mission -- before ultimately becoming KFF's Executive Director. Embracing Nelson Mandela's notion that "Many things seem impossible until they are done," Josh is exceptionally committed to doing whatever it takes to surmount any obstacles along the path to effectuating KFF's vision for a national-scale LHS that will advance medical research and patient safety, transform the practice of medicine, and empower clinicians and patients.


Patient Quality and Safety Room A
Session 3
12:30- 1:45 Device Safety Panel

Doctors, nurses, radiographers, medical physicists, these are the credentials you might expect find for MRI safety advocates, but architect? But that's what Tobias Gilk is, and in the past 10 years, he has become one of the industry's most influential voices on issues of safety and protections against preventable accidents.

Going from simply designing MRI suites, to collaborating with clinical and technical experts, to serving on the MRI Safety Committee for the American College of Radiology, Tobias has provided MRI safety training for the Joint Commission, contributed to MRI safety standards published by the ACR, and design standards for the VA, and the Facilities Guidelines Institute. He is an internationally invited speaker and consultant and is another example of how those committed to safety can affect meaningful change.



Joleen Chambers became her brothers' patient advocate after his 9/29/08 failed elbow implant "revision" surgery. (The elbow was originally implanted just four months earlier on 5/19/2008.) She researched and learned that FDA clears implanted medical devices through the 510(k) process that on 7/29/11 the Institute of Medicine reported is "flawed based upon its' legislative foundation".  This should not have happened to him. He should be cared for. Changes in federal public policy that she recommend: an implant registry, FDA patient/consumer voting stakeholder rights, device warranty, rescind medical device industry entitlement/pre-emption from state court.


Session 4 Dying At Peace, Dying In Peace: Engaging in a Complete End of Life Conversation
2:00-2:45

Ann Becker-Schutte, PhD is a licensed counseling psychologist practicing in the midtown area of Kansas City, MO. Her goal in therapy is to create a safe, supportive environment for her clients.

She believes that therapy provides several key benefits. The first is the opportunity to explore challenging life issues with a caring, neutral listener–someone whose only agenda is your overall health. Another benefit is the opportunity to explore difficult experiences in a safe setting. Therapy can become a “box” to hold issues that are too painful to explore in other settings. Finally, therapy provides the benefit of an objective outside perspective, which can bring new insight about life’s challenges.


Ann's practice specialties include the intersection of physical & emotional health, grief & loss, and infertility.  She firmly believe that our emotional and physical health are strongly related.  There is great research supporting this belief.  So one of her primary goals in her practice is to create a space for those who are coping with serious or chronic health issues to receive support and gain understanding of how their mind and body affect one another.






Bart Windrum served as his parents’ medical proxy throughout their end-of-life hospitalizations during January 2004 when his mother, after sudden respiratory failure, spent almost three weeks intubated in an ICU, and April-May 2005 when his father self-admitted for pacemaker eligibility testing, medically crashed, and succumbed to nosocomial urinary tract MRSA after it migrated to his bloodstream. The number, frequency, and range of systemic problems Bart’s patient-family experienced served as his impetus to examine why his parents’ demises were far from peaceful for all involved despite advance planning, open conversation, and family cohesion.

Bart describes his 2008 book, Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization, as a lay person’s root cause analysis of systemic shock and harm (and he notes that patient-families are part of the system). In it he offers guidance for how to advocate when hospitalized and how, from a practical standpoint, to increase our chances of experiencing a peaceful demise—something that most of us say we want and few achieve.

Today Bart focuses primarily on assessing impediments to dying in peace with the goal of increasing the likelihood of overcoming them. His experiences and observations since 04/05 have led Bart to adopt a contrarian’s assessment of the emerging national end of life conversation. Bart’s orientation is that we’re all best served by wide-ranging, candid discussion; apportionment of responsibility; and citizen-centric dying.






3:00-3:45 Jari Holland Buck on Patient Safety


JARI HOLLAND BUCK is a business consultant, trainer and medical layperson who spent seven and a-half months in four hospitals by the side of her critically ill husband. She dealt with thousands of doctors and nurses and almost daily crises. During her husband’s six plus months on full life support, every organ in his body failed, some more than once. And ultimately, a stroke caused by a hospital-acquired infection destroyed the personality and mind of the man she married.
Her book, Hospital Stay Handbook: A Guide to Becoming a Patient Advocate for Your Loved Ones, described the lessons she learned and used in partnership with the medical community to produce a miracle, her husband’s survival. The book was recognized as the Winner in the “Health Fitness for Family” category of Parent-to-Parent Adding Wisdom Award and a Finalist in the “Health” category of Fresh Voices Book Awards. Her work following her husband’s discharge from the hospital and their ultimate divorce has been focused on helping others avoid the pain and loss both she and her now ex-husband have endured.
Jari’s advocacy work has been acknowledged by the Institute for Healthcare Improvements with a full scholarship to attend the 22nd Annual National Forum on Quality Improvement in Health Care as one of fifty patient activists. She has provide advice to the University of Toledo Patient Advocacy Certificate program and Hospital Stay Handbook is used as one of two textbooks. She also serves as an Advisory Board member for the University of Kansas Medical Center Otolaryngology Department and is currently authoring a series of six articles on patient advocacy for a Health and Human Services publication called, The Best Times. Jari contributes to www.healthy.net,www.whathappensnow.comwww.llewellyn.comwww.bizymoms.comwww.selfgrowth.comwww.disabled-word.comwww.lovinghealing.com, The Story That Must Be Told and was featured in “Ahead of the Curve: Patient Advocate,” US News and World Report, December 11, 2008. She maintains a Twitter account on patient advocacy + new medical findings twitter.com/JariHollandBuck.




Media and the Message Room B

Session 3
12:30 -1:45 W. Ryan Neuhofel, DO, MPH: "Beyond Tweets & Status Updates"


W. Ryan Neuhofel, DO, MPH, called “Dr. Neu” by his patients, is a board-certified Family Physician practicing in Lawrence, KS.  He completed medical school at Kansas City University of Medicine and Biosciences (2004-08) and residency at  University of Kansas Medical Center (2009-11).  After serving as Chief Resident of Family Medicine during his final year of residency, he started a solo “Direct Primary Care” practice in December 2011 called NeuCare Family Medicine. NeuCare’s mission is to “provide high quality, affordable primary health care directly to our community”. Dr. Neu provides a broad spectrum of primary care in a unique fashion that includes both old-fashioned and high-tech services. In between doing house calls, he uses the internet in a variety of ways to connect with his patients. For personal issues, Dr. Neu is available 24/7 to his patients and they can communicate by email, phone or webcam for many issues . NeuCare has a Facebook page that provides news about the practice, health news and tips. Dr. Neu has recently started creating original health education videos using his digital camera, iPad and desktop computer.  He envisions a future where high-tech primary care is built upon a direct cooperative relationship between patient and doctor to create a true medical home in sickness and health.



Session 4
2:00-2:45 Lisa Fields: PowerPoints that snap, Crackle & Pop


Lisa Fields, M.S. Founder of Lisa Fields & Associates, is an adult education scholar with a master’s degree in adult education. Her clients include health care organizations, small business and nonprofits, as well as Fortune 500 companies.  Her firm gathers facts, blends them with practical wisdom and a dose of creativity and then delivers presentations, PowerPoint deck, and educational sessions worth your time. Lisa is a member of The Walking Gallery of Healthcare, an art advocacy initiative of Regina Holliday.  Her passion for health care began as she served as a Mental Health Senior Practitioner, Vocational Rehabilitation Counselor and Director of Education with a Residential Drug Addiction Treatment Center.

Lisa used her passion for sending Twitter Messages, also known as Tweets, during the Patient Safety and High Performance Leadership Summit held at the National Press Club. She also participated in HealthCampDC and later joined The Walking Gallery gathering.

Lisa, also known as Practical Wisdom on twitter, is an active participant and guest moderator for several health care social media tweet chats both in the US and internationally. Sypmplur  lists her as an influencer among several tweet chats. Lisa presented her webinar: Health care tweet chats 101: Everything you need to know for the Mayo Clinic Center for social media.
Ms. Fields, along with fellow Walking Gallery member Colin Hung, will launch a health care social media tweet chat focusing on leadership within health care this October.

Lisa adores her remarkable daughter Ally, a college freshman at the University of North Carolina Asheville. 


Session 5
3:00-3:45  Michael Millenson "I Need You (Mostly), You Need Me (Sometimes): Building a Relationship with the News Media"
See Bio Above)


Reporters need stories. You have a story to tell. The beginning of a perfect relationship, right? Ahh, if only "J(ournalist)-Date" was that simple. Relationships with the news media can have as many wrinkles as any other relationships: what that cable news reporter wants and needs can be very different from what's needed by a reporter for an online trade newsletter. This session will discuss how the media work, what to expect as a source and how the old media interact with the new and how, specifically, patient stories fit into the mix. It will also be interactive, enabling attendees to learn from each others' experiences.



Final Traditional Conference Session in Room A

4:00- 5:00 Olga Pierce from Pro Publica



Olga Pierce is a recent graduate of the Stabile Investigative Journalism Seminar at Columbia University, where she won a Horton Prize for health reporting. Before Columbia, she covered health policy for United Press International in Washington where, in addition to writing stories about Medicare Part D, uninsured Americans and AIDS vaccine, she appeared as a commentator on C-SPAN and went to Camp David as a White House pool reporter. Her stories have appeared in the Chicago TribuneNew York TimesHindustan TimesLincoln Journal-Star and other newspapers. Olga is fluent in Czech and has a bachelor’s in international economics from Georgetown University.


4:30-5:00 Lesa Mitchell from Kauffam Foundation Film Trailer 




Lesa Mitchell is vice president of Innovation and Networks at the Ewing Marion Kauffman Foundation. Her responsibilities include identification of programmatic and policy levers that can accelerate innovation and support networks enabling firm growth.

Mitchell was instrumental in the founding of the Kauffman Innovation Network/iBridge Network, the Translational Medicine Conferences in the United States and Europe, and the National Academies-based University–Industry Partnership. She also is a leader in the replication of innovator-based commercialization and mentor programs across the United States.

Mitchell recently served on the board of Gazelle Growth in Denmark, and currently is chairman of the Kauffman FastTrac board. She is an advisory board member of the National Science Foundation i-Corp program and of Modern Meadow Inc. Prior to joining Kauffman, Mitchell spent twenty years of her career in global executive roles at Aventis and Quintiles, and she was an entrepreneur focused on the global management of electronic clinical trials. 

Closing the session and transition to dinner: Regina Holliday


Dinner Served 5:15-6:15

Ignite-style speeches, (20 slides 5 minutes) begin 6:30-8:00

1. Josh Rubin (Bio Above):"Sharing Saves Lives: We are the Key to the Cure"

2. Ann Becker-Schutte( Bio Above): "Holding Hope at the Intersection of Physical & Mental Health"

3. Bart Windrum (Bio Above): "Dying In Peace: New Terms (of Engagement)"

4. Susan Hull: "We are ONE:  Ignite our collective voices"

Susan is an energetic, visionary nursing executive and entrepreneur, passionate about co-creating technology-enabled innovations, transforming health and care eco-systems to dramatically improve health and wellbeing, with national and internationally reach. Susan believes we can achieve an affordable, sustainable learning health system – where consumers, providers and communities are dynamically engaged and thriving. 

Susan is a national thought leader in redesigning healthcare in organizations and communities and brings experience from diverse roles, including designing and managing a new Children’s Hospital Emergency Service, nursing and health system executive, new healthy community partnership and community health information network (CHIN) executive, clinical informatics and decision support executive, consultant and action researcher.

6. Michael Weiss: “Using the Grassroots Patient Movement of Health Care Social Media to Manage Chronic Illness" @HospitalPatient



Michael A. Weiss is a 49-year old Patient Advocate, Health Care Commentator, Health Care Reporter, Blogger, Motivational Speaker and Video Journalist who focuses on matters pertaining to coping with chronic illness, almost exclusively from “The Patient Perspective.” He is also an Author, Attorney and MBA.
Michael was diagnosed with the auto-immune and incurable illness “Crohn’s Disease” in 1984. In July, 2001, after more than 100 Hospitalizations & well on his way to 20 + surgeries, Weiss wrote the critically-acclaimed Book, “Confessions of a Professional Hospital Patient,” determined to both CHANGE the unpleasant stigma associated with diseases like Crohn’s, Ulcerative Colitis and Inflammatory Bowel Disease and to HELP people with ALL chronic illnesses learn how to Cope, Live, Love & Laugh with their lot in Life. 
Now, in 2012, after more than 200 Hospitalizations and 20 surgeries, Michael utilizes the technology-driven grass roots movement of “Health Care Social Media” to demonstrate how Patients can share their information and experiences so that those with chronic illness from all over the world can learn and become empowered from one another without having to undergo unnecessary and depressing healthcare experiences or inefficient real life interactions with dedicated and compassionate Medical Professionals.
Weiss’ refreshingly candid and humorous accounts of his own medical trials & tribulations help others feel as if they are not so alone in their once thought of private battles caused by chronic illness such as physical, mental and emotional pain, family issues, maintaining  friendships, medical bills, and the constant associated financial pressures. It is Weiss’ hope that he and his similarly-minded Patient brethren or fellow “Crohnies” can make “Health Care Social Media” an incredibly powerful Patient Tool and true “Game-Changer” thus giving Patients a genuine Voice in all future HealthCare Reform discussions. 


7.  Carolyn Capern: (Social)Media Matters 


Carolyn is a Star-Spangled Canadian, with roots on both sides of the border that inform her perspective on politics and especially health care. The bulk of her adventures in health care began when she was in sixth grade, and began to suffer severe knee pain-a battle that continued through until college-and regrettably, it seems that health does not improve with age. Shortly after arriving for her first year of university in Washington, DC, she suffered a severe concussion that was misdiagnosed and poorly treated for several weeks, causing me to lose my memories of a three month period of time.


In 2009, she witnessed the best and worst of the American health care system. In the shadow of the Congressional debate over health care reform, she dealt with a knee realignment surgery and a sinus procedure, while watching from afar as her favorite professor suffered through cancer treatment. Both her problems were resolved with time and good care, while her professor ultimately died after being denied the same kind of quality treatment she received while in hospital. His death, which occurred on Carolyn's twentieth birthday, gave life to her commitment to fight for equal access to quality care. In his honor, She is proud to wear a jacket for The Walking Gallery called "Media Matters," depicting the importance of television and film in sharing stories of health care. 



8.  Amanda Greene: "Ignite!  From flare to flair: a journey to discovering LA Lupus Lady and "Lupus Style" @LAlupusLady.  



Amanda Greene enjoys connecting and sharing her passions with others.  Amanda is an advocate for Lupus, an autoimmune disease which afflicts more than 1.5 million people in the United States.  As "LA Lupus Lady", she raises awareness and support for Lupus and the Lupus community.  She creates YouTube videos, moderates the Facebook group "Lupus Awareness is Fun.", she openly shares her Lupus story and can often be found on her IPad "tweeting too much."She was diagnosed with Lupus in 1983, at the age of 15.  Today, Amanda not only "lives with Lupus" but is active, healthy and thrives.  Thriving with Lupus is not as easy as it sounds.  Amanda is constantly exploring new resources to manage her symptoms.  Connecting with Lupus patients, caregivers and others who live with chronic illness is one way that Amanda shares and engages with the wellness community.

As a voice and activist for Lupus and the Lupus community, Amanda believes that sharing caring.  In 2011, she moderated the "Lupus Ladies of Twitter" panel and spoke about how she is sharing that "Lupus Awareness is Fun because is it important." at the 140 Conference in New York City.  This past June, with Tiffany Peterson, she shared the impact Social Media has on the Lupus community.  Amanda described what "Lupus Style" means to her during the "#LupusChat #LupusStyle at the #140conf" panel at the 92nd Street Y in New York City.  In 2011, Amanda was a part of the "breakout sessions" at the Women in Pain Conference and spoke again this year on how Social Media can help you "Build Communities and Find your Tribe" online.

Amanda has a flair for style as an accomplished brand ambassador, wth particular experience in the fashion, entertainment and cosmetics industries.  She organized publicity events, both real-time and online, for nationally distributed brands and campaigns.  Amanda has developed successful campaigns and events for diverse clients including: CNN, Warner Brothers Television, the Mill Valley Film Festival, Bill Graham Productions and Grateful Dead Productions.  Connecting with Social Media is a natural extension of Amanda's warm personality.

Amanda lives in Los Angeles, with her husband Steve and their cat, “Rex Ryan”.  Her other interests include fashion, style, gardening and supporting the New York Jets!

9.  Erin Gilmer: "Breaking Boundaries"


Erin Gilmer is a patient advocate and health policy attorney specializing in HIPAA and HITECH in Austin, Texas.  She received her law degree from the University of Colorado Law School and was admitted to the State Bar of Texas in 2008.  She spent her last year of studies at the prestigious University of Houston Health Law and Policy Institute.  Ms. Gilmer graduated suma cum laude from the University of Colorado in 2005 with degrees in psychology and economics with an international emphasis and a minor in political science.  She has contributed to several publications including Health Law and Bioethics: Cases in Context and articles in the Journal of Experimental Psychology, Virginia Journal of Social Policy and Law, Journal of Medicine and Ethics, and the Texas Bar Journal.  Ms. Gilmer worked for the State of Texas, involved in the 2009 and 2011 legislative sessions focusing on public health.  She previously worked for several non-profit organizations including Disability Rights Texas, Texas Legal Services Center, and Rocky Mountain Children’s Law Center. Ms. Gilmer volunteers for several community organizations including Lisa’s Hope Chest, Austin Involved, and the Austin Young Lawyers Association.  Additionally, Ms. Gilmer founded Health 2.0 Austin, bringing together the Central Texas Community in health, technology, and disruptive innovation.

Erin blogs at www.healthasahumanright.comwww.austinhealth20.com and tweets @GilmerHealthLaw.


10. Casey Quinlan "How Asking What Things Cost Can Shift the System"
"Whoopee – cancer!"

That's not your average reaction to a cancer diagnosis, and Casey Quinlan isn't your average patient. When, after her 15th mammogram, she won the booby prize – breast cancer – her first reaction, after downing a stiff drink, was to cover her own cancer story with the same relentless inquiry she brought to her career in network television news, and that informs her work as a "business storyteller" and branding consultant.  Casey's approach to her treatment: be an active participant, not a passive consumer. Her metaphor for managing medical treatment? "It's like a car wash. When you go to a car wash, do you want to be inside the car, or strapped to the hood? Ask questions, make sure you understand the answers – you get to stay inside the car. Otherwise, you get lots of soap and wax up your nose!"

In Cancer for Christmas: Making the Most of a Daunting Gift, Casey shares the questions she asked her doctors, what she did with the answers, and how she navigated surgery, chemo, and radiation treatment with determination, ferocity, and a large dose of humor.  Fierce and funny, thought-provoking and inspiring, Casey's story of her journey to cancer-free is full of insight into how to survive, and thrive, after getting life-changing medical news.  Casey is a storyteller, speaker, media strategist, and writer with an extensive background in broadcasting, theater, and stand-up comedy, who believes that it – business, and life – is all about the story.

Telling a great story attracts and engages your target market, driving the growth of your brand.
Casey studied theater and performance at the University of San Francisco, American Conservatory Theater, HB Studios, and the American Comedy Institute.  From there, she launched a two-decade career in broadcast news and sports, covering stories for Dateline and Today, presidential campaigns, wars, presidential campaigns that turned into wars, NFL Playoff games, Stanley Cup hockey, and the NBA.  The highest and best use of her theater and improv training came when Casey talked her way out of police custody in Saudi Arabia during Operation Desert Shield in 1991. She talked her way out of jail, and then got to stay in Saudi for four months – she's still not sure that was really a win, but it's a great story.  She honed in-the-moment skills doing stand-up comedy, performing at Caroline's, Gotham Comedy Club, Catch A Rising Star, and the New York Comedy Club. After facing drunken hecklers, corporate audiences are a walk in the park.

It's all about the story – whether you're building a company, a brand, or a community. 

11. Jari Holland Buck (Bio See Above): "Hospital Infections - Prevention is the Key!"

12. Pat Mastors (Bio See Above) : "The Patient Pod: Putting Engagement Tools in Patients' Hands"

13. Lisa Fields (Bio Above): "Do you see what I see?"

14. Eunita Winkey "No More Clip Boards: The Behind the Scenes Struggle for the Medical Record"

Eunita Winkey is Founder/CEO of ATWINDS Foundation, Inc., and motto is "A Teacher's Work Is Never Done Services." She has appeared as a panelist for the Hysterectomy Education Resource Service Conference. In addition, she has participated in a number of health care forums, and conferences. Eunita has shared her movement with Congressman Steny Hoyer and Congresswoman Dona Edwards office. She has shared her unnecessary hysterectomy medical error story in many venues such as Radio One, Michael Baisden, 50+ Magazine, public schools, colleges, Health and Human Services Faith Expo, Congressional Black Caucus Foundation, churches, community, government, AARP and National Council of Negro Women Planning for Long-Term Care Campaign, and the Point TV show on DC cable as co-producer of the health care show. Eunita advocates the Walking Gallery for Regina Holiday and she is featured in Surfing the Healthcare Tsunami participating in the Walking Gallery (http://www.safetyleaders.org/Discovery/surfingTsunami.jsp). Eunita also advocates for electronic medical records (no more clipboards), elderly neglect and abuse, and medical ethics. As a doctoral student pursing her Doctorate in Education Leadership, she believes that research is vital to all issues,solutions,and effective leadership. For her dedication to the cause the Senator Thomas V. Mike Miller, Jr. (President)and the Senate Members of Maryland presented ATWINDS Foundation, Inc. and David Bynum (Eunita's deceased father who died of medical errors) with a Maryland Resolution. The resolution states "Be it hereby known to all that the Senate of Maryland offers its sincerest congratulations to Eunita Harper Winkey, Founder/President ATWINDS Foundation Inc. in recognition of your dedication to helping others, mentoring children strengthening communities and serving many through such programs as the Katrina Project and the Medical Record Awareness program. The entire membership extends best wishes on this memorable occasion and directs this resolution be presented on this 30th day of June 2011."



Shuttle back to Marriott 8:15pm

Shuttle to Riverport leaves Marriott 7:00am   
Sunday Registration begins at 7:30 am 
Breakfast in exhibition space

HealthCamp, an unconference will be held on Sept 23rd in Kansas City as part of the Partnership with Patients summit. Mark your calendars for the weekend of September 21st -23rd. HealthCamp hosted by Mark Scrimshire will cap off an exciting weekend at Cerner’s educational facility in Kansas City. Continuing the innovation learning approach from the previous days, patients, physicians, nurses, technologists, health system and policy leaders, payers and suppliers will create session topics the day of the event focused on "Empowering Patient Engagement." The unconference process and the Center for Total Health itself will create a flexible and energetic collaborative environment for participants. Check out the HealthCamp Foundation home page for other HealthCamp information. 



Greeting: 8:00 in room A
Break into unconference sessions 9:00 am/patient speaker boot-camp
Session rooms B,C,D,E,F,

Patient Speaker Boot camp stays in room A to record speeches
9:00 am to 12:00

Grid times for Unconference
9:00am -9:45
10:00-10:45
11:00- 11:45
12:00- 12:45 Lunch and good byes to early departures Exhibition space
1:00pm - 1:45
2:00-2:45 Wrap up in Room A
     

For more information about the summit and to receive media access with press credentials, contact @ReginaHolliday on twitter or 202-441-9664

About Partnership With Patients
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 

19 comments:

  1. Kansas City is so lucky to have this summit in our backyard. I know that there will be amazing energy this weekend. I'm thrilled to debut my Walking Gallery jacket.

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    1. You were amazing. I am so glad you were able to be part of this.

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  2. wow, wow, wow, this looks amazing, wish I could be there but Kansas is a long way away from the UK and I guess the healthcare systems are so different, while both countries can learn from each other, ultimately we need something like this over here! I'd love to hear about any comparable initiatives on the other side of the pond from you guys. In the meantime just sending you every good wish for a fantastic conference, I'll be watching with interest via the wonderful internet superhighway thing.

    *waving smiling and bowing in awe to you all*

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    1. Dear Lorraine,

      We put this together in a few months with the help of a lot of friends! I bet you could do it too!

      Delete
  3. Broken-hearted that I can't get there after all! I'll be thinking about you all and can't wait to hear about it afterward...

    Trisha Torrey
    Every Patient's Advocate
    http://everypatientsadvocate.com

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    Replies
    1. We missed you Trisha. You would have loved the energy...

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  4. Get your UnDiagnosing Emotional Distress T-shirts live in person tonight at the conference! Follow me on Twitter at @UnDiagnosing and @CorinnaWest for conference updates.

    http://corinnawest.com/store/products/undiagnosing-emotional-distress-t-shirts/

    ReplyDelete
    Replies
    1. I am so glad you and your T-Shirts were there!

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  7. Regina,
    Thank you for gathering so many of us who have worked so hard to do what we can to ensure the voice of the patient will be heard. Your Partnership WITH Patients in Kansas City MO was simply a labor (HARD Labor) of love.

    "If you push me I'll push back." when I heard you make this statement my heart warmed. The manner in which you push back is powerful and yet always full of Love, Grace and Integrity.

    Lisa

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    1. Yeah, I am really nice up to a point. Then I push back. It is sort of like Red Rover. I really loved that game as a child.

      Delete
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  14. That was a great gathering. of patients. Such gathering should be arranged sometimes. it is so needed. I was also interested to go there.

    ReplyDelete