The Global Patient & Family Advisory Council (GPFAC) provides guidance and input on the direction of The Beryl Institute. A critical commitment of the Institute is to serve as the hub for all voices impacting and influencing the patient experience movement. The GPFAC complements the Institute’s boards by ensuring the voices of patients and families are a central consideration in the strategic direction and offerings of the Institute. The Council reviews the Institute’s areas of focus and current resources and offer suggestions on new opportunities, topics of interest, etc., ensuring the perspective of the patient is part of all Institute efforts.
Patient Advisor, Augusta University
David Andrews been a patient advisor at Augusta University (formerly Georgia Regents Medical Center) for 12 years. During that period he has been a member of many Patient and Family Advisory Council, quality committees and quality improvement projects. He has frequently been involved in training (both in Georgia and at other hospitals) people from other facilities who are interested in learning how to do Patient and Family Centered Care, and has done presentations at many conferences, from the local to the international. He is currently a patient advisor for the Georgia Hospital Association and with many other national organizations and projects. He spends part of each year in Maine and has done training and presentations as well as working with several organizations there. Before retirement, he was a college professor in New Hampshire.
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Victoria W. Baskett #
Founder and President, Victoria Baskett Patient Safety Foundation
Victoria W. Baskett is the Founder and President of the Victoria Baskett Patient Safety Foundation. Her non profit’s mission is "To improve patients safety by educating patients and families on the importance of finding their voices.” Victoria became dedicated to patient safety after questioning of medical errors in her own care saved her life. Since her healthcare experience in June of 2013, she has been an advocate for patients and families serving as active and involved members of their healthcare team. She serves as Co-Chair Elect for the North Carolina Quality Center’s Patient and Family Advisory Council, and served on the Patient Safety Movement’s Handoff Communications (Actionable Patient Safety Solutions #8) Revisory Group. This APSS, along with the 11 other revised solutions were released at the 2016 World Patient Safety, Science & Technology Summit. She was awarded the 2015 World Health Literacy Hero Award in honor of her dedication to improving health literacy for patient safety. Victoria will graduate in May of 2016 from The University of North Carolina at Chapel Hill with a Bachelor of Arts in Exercise and Sport Science with a minor in Spanish for the Medical Professions.
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Shari Berman #
Senior Advisor Patient Centered Care, Dana-Farber Cancer Institute
Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast cancer 8 years later. Shari graduated from Cornell University and worked as a Human Resources Manager in the financial services industry for 15 years. After losing her mother to lung cancer she decided to spend her time advocating for patients and lending her perspective and expertise as patient, long-term survivor, caregiver and business professional. Shari is a former co-chair of the Dana Farber Adult Patient Family Advisory Council where she effectively led an effort to restructure the Council and strengthen its role within the institution. he also served on Dana Farber’s quality committees and is currently a member of the Quality and Patient Safety Committee of the Massachusetts Board of Registration in Medicine. Shari has spoken on behalf of Dana Farber at many fund raising events and presentations on survivorship and patient care. Her talks have focused on a variety of topics including her personal experience with cancer, survivorship issues, patient centered care and how to develop and sustain an effective Patient and Family Advisory Council. Shari has also been asked to consult on a variety of projects with organizations such as the National Academies of Medicine, (formally Institute of Medicine), American Society of Clinical Oncology (ASCO), The Journal of American Medical Association (JAMA) and Livestrong. Shari started a blog called Lifeaccordingtosomebody in 2015 and writes about a variety of issues through the lens of a cancer survivor.
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CEO, Perception Strategies
As a keynote speaker and consultant, Brooke Billingsley provides thought provoking insight as she shares her trifecta of knowledge as a cancer patient, 250,000 healthcare consumer reports, 100’s of clinical employee interviews and ethnography studies on low performing hospital units. If you can’t define patient experience, you can’t provide it and you can’t measure your success in delivering it. Brooke shares her emotional journey as she continues to navigate her way through the healthcare system on the path to healing. Her unique perspective as healthcare consultant, human behavioral expert and now as a patient provide her audiences and clients with strategies to access low hanging fruit, maximize marketing efforts and convey a message of truth. Brooke is co-founder and CEO of Perception Strategies, Inc., a national healthcare mystery shopping and customer service company since 1998. Brooke co-authored Turn Your Customer On: 23 Ways to Motivate Employees and Make Your Customers Love You. This book is a guide for companies who want to create a never-ending commitment to customer excellence. Brooke has been featured on Good Morning America, and in The Wall Street Journal and several professional healthcare magazines.
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Communication Specialist, Author and Managing Director of Teleopen Ltd.
David Festenstein is a Communication Specialist, Coach and Professional Speaker, who suffered a stroke in 2008, that left him paralyzed on his right side and unable to walk. David used a lot of his communication expertise to help him deal with the event and then subsequently to support and drive his recovery process.
In fact his Stroke Consultant said, it was one of the best recoveries he had ever seen. David kept an extensive diary and Journal that reflected his Language of Recovery. When he reviewed his story and observations, he realized that he had used 7 distinct steps to his recovery. His Stroke Consultant encouraged him to speak at Medical Conferences where he got excellent feedback. On the basis of this success, he set up workshops, training and coaching health professionals in his 7 steps to recovery model. The Stroke Association also made a podcast of his story.
David's 7 Step to Recovery Model has given many health professionals insights on what they can do further to help their patients in their recovery process.
Emily Follman #
Lead Family Partner, St. Louis Children’s Hospital
Emily Follman is a management consultant with expertise in process improvement, project management, business analysis, and is a trained facilitator. Emily is also a Lead Family Partner at St. Louis Children’s Hospital (SLCH) helping to build and grow the Family Partner Program. SLCH Family Partners are currently engaged in many efforts, including Performance Improvement (LEAN); Education (Resident, Staff, and Family); and Advisory. Emily graduated from the University of Michigan with a BA. Upon graduation, she moved overseas to teach English in Japan, and then explored the world as she worked and backpacked her way through New Zealand, Australia, Indonesia, Thailand, and Singapore. Upon her return to the United States, Emily settled in Washington DC and worked for Delphi International as an administrator of international exchange programs for foreign government and business professions. She later worked as the Assistant to the Director of Healthcare Policy for Amgen. Emily moved across the country to return to school, receiving her MA in International Affairs from UC-San Diego. Her graduate summer internship took her to Tokyo as an employee of the State of Missouri Trade Office. Emily returned to her hometown of St. Louis, MO in 1998, and began her career as a management consultant, first for Arthur Andersen, and currently, as an independent consultant. Emily’s involvement with St. Louis Children’s Hospital began with the birth of her first child, Benjamin, in 2002. Benjamin was diagnosed with a congenital heart defect at two weeks of age, and is currently a thriving 13-year old who has survived three open heart surgeries and numerous other medical procedures, and is a big brother to 10-year old Isaac.
Erika Holliday #
President, Ann and Robert H. Lurie Children’s Hospital Family Advisory Board
Erika knew at 27 weeks of pregnancy that this race was not going to be a sprint but a marathon. Diagnosed in utero with Spina Bifida, her son Aaron was born not only with a hole in his back but with hydrocephalus as well. Aaron is now a 17 year-old high school junior. Over the years Erika has grown to know the importance of being an advocate for your child. She is the current President of the Ann and Robert H. Lurie Children’s Hospital Family Advisory Board and also sits on two hospital committees; The Patient Safety Council and the Family Experience Advisory Council. Erika has presented on panels at conferences on the topic of Patient and Family Councils and the need for patient and family involvement. Erika has a B.A. in Political Science from Tufts University and a law degree from Syracuse University College of Law. She has served in numerous capacities as a volunteer in her community and currently works as a substitute teacher.
Artist, Patient Advocate and Founder of #TheWalkingGallery
Regina Holliday is an activist, artist, speaker and author in Washington DC. You might see her at a health conference painting the content she hears from the patient view. She is part of the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team. Regina, like her friend Dave deBronkart, is also an e-patient. She utilizes the tools of technology and social media to better understand the patient condition and the landscape of medicine.
Regina is a mother and a widow; she speaks about the benefits of HIT and timely data access for patients due to her family loss. In 2009, 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. Her paintings became part of the national debate on health care reform and helped guide public policy.
Program Manager, Patient Engagement, Northwestern Memorial Hospital
D’Anna Holmes plunged into the world of family and patient experience after giving birth to her son 3 months prematurely. D’Anna’s son spent 4 months in the neonatal intensive care unit and was diagnosed with stage III liver cancer shorty after his first birthday. The past 8 years her son’s health has been a window into both the positive and negative of healthcare and healthcare providers. D’Anna readily admits that she and her family have had some tremendously positive experiences. At the same time, they have also had experiences that were not only negative, but also compromised her son’s safety. In her experiences as an advocate and caregiver for her son, D’Anna has been featured in a number of magazine publications, news broadcasts, and on the Oprah Show.
Wanting to get more involved with patient and family experience professionally D’Anna completed her master's of science in health administration at the University of Alabama at Birmingham in 2011. She has gone on to work with a number of acute care organizations in roles focused on patient satisfaction, patient engagement, and Joint Commission readiness. D’Anna currently works with Northwestern Memorial Hospital as a Program Manager in Patient Engagement.
Tina Jones # Tina Jones has served as the healthcare advocate for multiple family members. First with her father-in-law who died of cancer many years ago to her mother-in-law who lost her battle with ALS. She’s seen the best of healthcare and the worst and began a career in healthcare to help others. Tina has over 30 years in customer service but the patient experience really spoke to her both through her personal experiences and those of her family. She wanted to make a difference and wanted those experiences to be better and to help the healthcare professionals see the experience through the patient's eyes. She currently works as a Patient Experience Coordinator at Saint Luke's Hospital and feels her mission in life is to help healthcare caregivers get back in touch with why they got in to healthcare in the first place and help them make healthcare truly patient centered.
Patient Experience Coordinator, Saint Luke's Hospital
Founder, Joan's Family Bill of Rights
Barbara Lewis launched a three-decade career first as a journalist writing for numerous national publications from the Wall Street Journal to Ladies Home Journal and from Physicians Management to Modern Healthcare. She returned to school, obtaining an MBA from the UCLA Anderson School of Management, where she’s taught business communications and where she currently lectures on primary research. After receiving her MBA, Barbara founded a marketing consulting firm. Act three of her career began when she wrote Joan’s Family Bill of Rights about her sister’s last days in the ICU. When the health system asked her to make three presentations at their facilities, she was shocked by the number of healthcare professionals who lined up to tell her their stories. She decided to leave a consulting career and work to improve the patient experience.
Since 2013, Barbara has been researching Patient and Family Advisory Councils (PFACs) and building a business case for why hospitals should have one. Unfortunately, only 55 percent of hospitals have a PFAC. The Beryl Institute supported a survey that she conducted at the beginning of 2014 and the Partnership for Patients supported a second survey at the end of the year. She continues to accumulate examples where PFACs have saved hospitals money, increased safety and improved the patient experience. Barbara is the part-time Managing Editor of DocCom, an online communication learning program for clinicians.
Tanya Lord PhD, MPH #
Director of Patient and Family Engagement, Foundation for Healthy Communities
Tanya Lord is currently the Director of Patient and Family Engagement at the Foundation for Healthy Communities in New Hampshire, a partner organization of the NH Hospital Association. She works with all NH hospitals to develop and enhance patient engagement programs. Tanya also works as a patient safety, quality improvement, and patient/family engagement consultant nationally with organizations including The American Hospital Association, Tufts Medical Center, The Institute for Healthcare Improvement and the Coalition for the Prevention of Medical Errors. Tanya has shared her son’s story of medical error and the importance of engaging and communicating with patients and families at key note presentations and conference workshops. Tanya holds a Masters of Public Health from the University of New Hampshire and a Doctorate in Clinical and Population Health Research from the University of Massachusetts Medical School. She is also a co-founder of The Grief Toolbox, which offers tools to help those along the grief journey.
Health Consumer Advocate
The death of Stephanie's son in the hospital and the experience of receiving suboptimal care was the catalyst for Stephanie's involvement in health care design and delivery. Stephanie is passionate about ensuring the unique and valuable experience and knowledge of health consumers and patients informs, leads and activates change in health care policy and practice. Equally passionate that patients and health consumers are seen by all in health care as valued partners not only within their own health care but in system design also, Stephanie collaborates with health providers and health care organizations to embed partnerships principles in organizational systems and to facilitate collaboration with health consumers and patients.
Stephanie's commitment to advancing provider-patient collaboration and a user led design approach has included organizing and co-facilitating the landmark World Health Organization (WHO) Patients for Patient Safety 3 day workshop in Australia. In her role as a foundational member of WHO Patients for Patient Safety and Patient Safety Champion, Stephanie assisted in bringing together health consumers and patients who had experienced harm in health care, health providers and policy makers to develop strategies and actions for working together in partnership to advance patient safety in Australia.
Stephanie has contributed her expertise in patient safety, quality improvement, population health, research, consumer advocacy and engagement, risk management, innovation and the client experience to health care policy and practice at state and federal levels in Australia and internationally as a health consumer advocate, health consumer representative and consultant on health consumer experience for the past 11 years.
Zal PressZal is the leading patient proponent of the use of patient narrative in medical education as an innovation tool to improve the practice of patient centered care. He founded Patient Commando Productions in 2010 as a social enterprise to produce authentic Patient Experience programming that informs and enriches our understanding of critical Health Care Issues. Patient Commando Productions is a CME provider of accredited continuing medical education programming focused exclusively on the patient experience.
Founder, Patient Commando Productions
For 25 years prior to founding Patient Commando Productions, Zal was the president of a contemporary wall décor manufacturer after a career as a marketing and communications professional. Throughout this period, he managed a chronic illness while developing his new career as a professional patient. His wife and 2 now-young adult children played pivotal roles in the 30 years it took him to move up the patient engagement ladder.
Patient Commando Productions produces Medutainment – health education informed by the patient experience using visual and performing arts. The company facilitates patient storytelling clinics with award winning, Second City alumnus, Brian G. Smith and presents live stage events such as the Canadian Comedy Award winner "Cancer Can’t Dance Like This,” a one man show starring Daniel Stolfi. The website is the most diverse collection of patient stories in any medium, with contributions from accomplished authors, filmmakers, educators, researchers and numerous internationally recognized patient advocates. Through innovative partnerships such as the collaboration with the Canadian Public Health Association, the site provides a platform for the unheard voice of remote, vulnerable and marginalized health populations.
Lori Sweeney # A Maine native, Lori professionally entered healthcare in 1994 as a physical therapy assistant, providing direct patient care across many settings. She later served as Director of Quality and Risk Management, supporting quality care and patient safety initiatives. In 2014 Lori became the Patient Experience Manager at a local hospital where her passion for improving the patient experience grew. Appreciating the importance patient and family voices have in the delivery of care, Lori developed the hospital’s first Patient and Family Advisory Council. She currently chairs the council. Lori’s personal patient experience began in 1994, when she was diagnosed with breast cancer at the age of 24. In 2013, Lori’s mother lost her courageous battle to breast cancer; reinforcing her desire to make a difference. This however would not be the end of Lori’s own journey. In 2015, she was again diagnosed with breast cancer. These experiences have strengthened Lori’s passionate commitment to helping ensure a positive healthcare experience for all.
Patient Experience Manager, Southern Maine Health Care