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Empowered patients are kicking butt! Patient communities are waking up, getting organized and disrupting the healthcare landscape. They are impacting strategies, policies, and setting the stage for new patient-centric innovations. National thought leaders like ePatient Dave and Regina Holliday demonstrate the new clout of this community, shaping the way hospitals and doctors think about patients and prodding them to improve the patient experience. Join Sarah Krug, President-Elect of the Society for Participatory Medicine and Executive Director for Cancer101.org. She has put together a panel of demanding ePatient judges to score startups exclusively from the patient perspective. Join us to hear from innovators building the perspective of patients into the innovations designed to serve them.
emPowered Patient Panel
My Six Word Story: Relentless Advocate, Reaching for the Stars.
Sarah Krüg is CEO of CANCER101, a patient advocacy organization she has been on the board of for three years, in a quest to help patients and caregivers navigate the cancer journey. She is also President-Elect of the Society for Participatory Medicine, a patient/provider member driven organization whose mission is to enable collaborative partnerships between patients and healthcare professionals. She serves on the board and as Research Chair of the Cancer Patient Education Network, an organization created by NCI to provide a framework for patient educators across institutions worldwide. She is also on the CPEN Health Literacy Committee.She previously held the position of Global Education Director in the Medical Education Group at Pfizer, focused on establishing global health care improvement strategies and medical education standards worldwide. She also established the Global Investigator Initiated Research Program at Pfizer. Prior to joining Pfizer, Sarah spearheaded the development of the Pediatric Disease Management clinical pathways and conducted clinical research at Memorial Sloan- Kettering Cancer Center. In her spare time, Sarah enjoys writing and is contributing writer for Pharmaceutical Executive.
My Six Word Story: Created app, got healthy, changed life.
For the last 10 years, Brett Shamosh has guided the creation, management and distribution of digital content and applications for media companies such as the NHL, Oxygen, CSTV (CBS College Sports) and Tango Media. At the age of 16, Brett was diagnosed with Ulcerative Colitis, a chronic digestive disease that impacts quality-of-life. During a flare of his disease in 2009, he developed a symptom tracking iPhone application to provide better data to his doctor and learn more about his symptoms, medications and diet. Upon recognizing the benefits, he became an interactive health evangelist to help fellow sufferers of chronic disease work closely with physicians to manage their health and wellness. In 2010, Brett started WellApps, an interactive health company that focused on mobile management of chronic diseases. Medivo acquired WellApps in 2012 and Brett joined the team as VP, Product Development, tasked with ensuring that all Medivo products provide meaningful value to providers and patients.
My Six Word Story: Patient First. Then Lawyer. Lady Always.
Donna R. Cryer, JD, is CEO of CryerHealth, a global healthcare consulting firm based in Washington, DC focused on creating innovative programs and collaborations that foster increased patient engagement with health information technology, health policy, and healthcare systems improvement. A liver transplant recipient who communicates in social media under the name DCpatient, Mrs. Cryer is chair of the Board of Directors of the American Liver Foundation, serves on the Patient and Consumer Advisory Council for the Center for Medical Technology Policy, and the Next Century Healthcare Leadership Council for the Adventist Health System. Mrs. Cryer serves as a Patient Representative to the U.S. Food and Drug Administration.
My Six Word Story: Brain tumor survivor, e-patient, and healthcare entrepreneur
Akiva is the founder of Health2Social, Inc., and is the editor of the Health2Social blog on healthcare, technology, and social media. Akiva currently serves on the board of the Children's Brain Tumor Foundation. After being diagnosed in 2005 with an inoperable brain tumor and given two years to live, Akiva went on the hunt for the best neurosurgeon out there that would be willing to cut into his brain stem. Utilizing his vast social network and Web 1.0 tools such as Yahoo Groups, Akiva was able to find the doctor who would save his life. Along the journey, Akiva experienced and witnessed the tremendous complexity and difficulties of the medical system in America, and decided to dedicate his life to improving it. Akiva obtained a Masters in Public Health in Health Policy and Management from Columbia University and went on to work as a healthcare consultant for Mercer and Towers Watson. Akiva’s clients included many Fortune 500 companies, including one of the largest hospital systems in New York State, pharmaceutical companies, and several large manufacturing firms. Akiva founded Health2Social, and is currently working on developing an initiative devoted to empowering patients to make better healthcare decisions.
Christine Miserandino is an award-winning writer, blogger, speaker and lupus patient advocate. Her writing about lupus and her “Spoon Theory” of communicating about chronic illness has been featured in numerous newspapers, magazines, medical newsletters and television media around the world, as well as on her website ButYouDontLookSick.com. Long Island Business News recognized Christine as a “Volunteer Healthcare Hero” and NY Newsday featured her as “one to watch” on Twitter as well as highlighting Christine in a full page spotlight on her work in the lupus community on Long Island and online. Ms. Miserandino is a guest expert on WebMD.com’s Lupus Community. She had the honor of being the host on WebMD.com’s video series called “Speaking of Lupus” Recently Christine was featured on the national television show "The Revolution" to talk to Toni Braxton about Lupus. Christine is currently a member of the board of directors the Lupus Alliance of America Long Island/Queens NY Affiliate. Unfortunately, it seems Lupus never comes alone and since her initial diagnosis, has also been diagnosed with Fibromyalgia, Sjögren’s syndrome, Raynaud’s disease and neuropathy. When not advocating for lupus awareness; Christine loves spending time with her daughter Olivia and her family.
My Six Word Story: Tiffany Peterson, Lupus Warrior, ePatient Advocate
Tiffany is an ePatient advocate, lupus warrior, and multiple community manager spreading her social media wings to help educate the masses. She was diagnosed with Systemic Lupus Erythematosus in Februrary 2010; two months later she created Friends Against Lupus which evolved into a online support system uniting patients, caregivers, and families in the lupus community all across the globe. Tiffany continuously encourages them to accentuate the positive while also informing them how to go from lupus to living. Today there are over 9,000 members in her online Friends Against Lupus community. Tiffany is also on the S.L.E. Lupus Foundation's Young Leadership Board and is head of their Awareness Committee. She has spoken at several conferences; the latest being Power to the Patient Panel at Social Media Week NY 2012 and ONC Consumer Track at Health Datapalooza 2012. You can find her tantalizing the healthosphere with her intellect and valuable patient experience not only in person but also on multiple social media outlets on her quest to make a difference.
Alicia C. Staley works as a community manager at The HIT Community, a start-up company based in Wakefield, MA. She contributes to the User’s View Blog providing her perspective on health information technology and social media issues facing patients and healthcare workers in today’s rapidly changing healthcare industry. With an engineering background and MBA/MS degrees in information systems, Alicia applies her technical knowledge in creative ways to bring different healthcare communities together to leverage knowledge, solutions, and support in efficient, effective ways. Alicia is a three-time cancer survivor committed to making a difference in the health care community. She started the Staley Foundation, a non-profit organization based in Boston, MA, in October 2007. The Foundation serves as a way to provide education, advocacy, and assistance for those affected by cancer as patients, caregivers, family, or friends. Alicia has in-depth knowledge of the power of online communities and provides consulting services to many companies looking to build platforms to interact with consumers and patients in meaningful ways. As an inspirational speaker, Alicia reaches many different audiences, providing insight into life as a 20-year cancer survivor.
My Six Word Story: Hypertension in pregnancy (preeclampsia), prevention, primary care.
Elizabeth Bailey is a Health Advocate and the Author of The Patient’s Checklist: 10 Simple Checklists to Keep You Safe, Sane and Organized. The book provides 10 user-friendly, common-sensed based checklists to help patients and caregivers navigate and better manage and monitor the complexities of high-tech hospital care.
As a producer, director, and vice president of video production for several record labels, Elizabeth Bailey used checklists to oversee hundreds of music videos for a wide range of artists that included Whitney Houston, Sheryl Crow, Sarah McLachlan, Metallica and Rod Stewart among others. While helping her father through a long hospitalization that was the result of medication errors and failures in communication along the care continuum, she realized how production checklists could be adapted to help patients partner with their providers to get better, safer care. She embarked on a career change, working on THE PATIENT’S CHECKLIST for several years and enrolling at Sarah Lawrence College where she is currently completing studies for a Master's in Health Advocacy. She has worked as a Patient Representative at a major teaching hospital in New York City.