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Global Patient and Family Advisory Council
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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.



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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Alicia Cole
Executive Director, Alliance for Safety Awareness for Patients

Prior to 2006, Alicia Cole was a successful working actress whose only experience with healthcare was playing doctors on TV. All of that changed however when she entered the hospital for a routine procedure to remove two small fibroids. Alicia left the operating room with a fever, nausea and pain. She declined from there. Five days later, during a dressing check, Alicia's mother noticed a small black dot near the incision. In just over an hour the dot morphed into a quarter-sized pustule. Immediately Alicias doctor assisted by her mother performed a bedside surgery cutting open her abdomen and draining the toxic fluid.

So began the nightmare of sepsis, pseudomonas- Zyvox, Zosyn and seven other powerful antibiotics along with nine blood transfusions as Necrotizing Fasciitis ate away at her abdomen. Suddenly a two-day hospital stay turned into; two months, six additional surgeries, near amputation of her leg, a year and two months of twice-a-day home health care for dressing changes, five months of daily hyperbaric oxygen chamber treatments and three years of treatment at a wound care center for an open abdomen.

Alicia Co-Sponsored and lobbied successfully for passage of two California Laws for Patient Safety and Public Reporting of infection rates and is a member of the State HAI Advisory Committee. This year she also became a member of the Wyoming HAI Advisory Group. From her experience Alicia has become a tireless advocate for patient safety. Today she shares her story with healthcare professionals and patients everywhere, so they might learn from her case. Alicia is also currently a Graduate Certificate Candidate in the Healthcare Management & Leadership Program at UCLA.

 


Dave deBronkart
Patient Engagement Advocate, Activist and Author


Dave deBronkart, widely known as e-Patient Dave, is a cancer patient and blogger who has become a noted activist for healthcare transformation through participatory medicine and personal health data rights. The term e-Patient was coined by Doc Tom Ferguson MD and is the subject of his seminal paper, e-Patients: How They Can Help Us Heal Healthcare, funded by Robert Wood Johnsons Pioneer Portfolio. In 2009 Dave's blogging about health IT put him on the front page of the Boston Globe and thrust him into DC policy discussions about patient access to medical records under Meaningful Use. He's appeared in Time, Wired, U.S. News , and the HealthLeaders cover story Patient of the Future. In 2009, HealthLeaders named him and his doctor to their annual list of 20 People Who Make Healthcare Better for their role as founding co-chairs of the Society for Participatory Medicine, bringing official recognition to the importance of the e-patient movement. In 2011 his TEDx talk On.TED.com/Dave went viral globally, rising into the top half of the most-viewed TED talks of all time; volunteers have added subtitles in 26 languages. Its tagline is his appeal: Let Patients Help.

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David Festenstein
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.



Regina Holliday
Artist, Patient Advocate and Founder of The Walking Gallery


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.



D'Anna Holmes
Patient Engagement System Area Manager, LodgeNet Healthcare

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 LodgeNet Healthcare as a Patient Engagement System Area Manager.



Libby Hoy
Founder, PFCC Partners

As the mother of three sons living with mitochondrial disease, Libby has over 20 years of experience navigating the health care system. Libby began volunteering as a Parent to Parent Mentor in 1995 and has been working to improve health systems and empower patients and families to be active partners in care ever since. In her role as the first Family Advocate at Miller Children's Hospital, she developed the Parent to Parent Support Program, the Parent Advisory Board (Council) and created the structure for the long term integration of the Patient & Family voice within the organization. Libby has presented at multiple national and international conferences on subjects related to Patient & Family Centered Care and Family Empowerment.

In 2010, Libby founded PFCC Partners. The mission of PFCC Partners is to partner with patients, providers and organizations to improve the quality, safety, experience and delivery of health care. Libby has worked directly with more than 30 hospitals and healthcare organizations to design and implement patient & family engagement programs, which include Patient & Family Advisory Councils as well as support and empowerment programs. Libby lives in Long Beach, CA with her three sons and husband.



Linda Kenney
Executive Director and President, MITSS

Linda K. Kenney, Executive Director and President of MITSS (Medically Induced Trauma Support Services, Inc.), founded the organization in 2002 as the result of a personal experience with adverse medical event, when she identified the need for support services in cases of adverse events and outlined an agenda for change. Since that time, she has been a tireless activist for patient, family, and clinician rights. She has become a nationally and internationally recognized leader in the patient safety movement and speaks regularly at healthcare conferences and forums. In 2006, Linda was the first consumer graduate of the prestigious HRET/AHA Patient Leadership Fellowship. That same year, she was the recipient of the National Patient Safety Foundations esteemed Socius Award, an annual award given in recognition of effective partnering in pursuit of patient safety. She has authored and contributed to a number of publications on topics including the emotional impact of adverse events on patients, families, and clinicians. Linda serves on the boards of the Massachusetts Coalition for the Prevention of Medical Errors, National Patient Safety Foundation and Planetree.
 


Barbara Lewis
Founder, Joan's Family Bill of Rights

Barbara Lewis life took an unexpected turn in 2012 when her sister Joan spent two weeks in the ICU. When she saw her sister getting better, Barbara relied on her three decades as a successful marketing consultant to observe hospital personnel and jot down impressions of the patient and family member experience. Her plan was to meet with the head of the ICU the day Joan was released and share her observations.

However, Joan died unexpectedly of an unknown infection. Barbara decided to email the ICU, calling her message, Joan's Family Bill of Rights. The head of the ICU sent the document to the hospital's chief operating officer and he, in turn, sent it to the heads of the healthcare system. They asked Barbara to make three presentations at their facilities and videotaped the speeches as the cornerstone of their training program.

At the hospitals, she spoke to a couple hundred people many of whom told her their stories, which had similar themes to the actions she had observed in the hospital. Barbara began to think that she had struck a nerve and she came away from that experience with a desire to help hospitals improve the patient and family member experience in her sister's name.

 


Dale Ann Micalizzi
Founder and Director, Justin's HOPE Project

Dale Ann Micalizzi is nationally known advocate for pediatric patient safety and transparency in medicine. Her eleven-year old son, Justin, died following a simple incision and drainage of an infected ankle in 2001. She has worked tirelessly in search of answers about her son's death, giving rise to a quest to improve pediatric patient safety and transparency in health care. Her efforts focus on compassion and support for grieving families, full disclosure of adverse events and education and reform that will restore ethics and safety to medicine.

She has presented as a faculty member for the Institute for Healthcare Improvement beginning in 2005, IHI Forum Co-Chair in 2011 and Patient and Family Advisor. She has acted as a consultant, speaker and improvement advisor for numerous health care organizations, several medical schools and patient/family support programs. She is the founder and director of Justin's HOPE Project at The Task Force for Global Health (Child Survival and Development) which provides yearly healthcare scholarships to caregivers working with vulnerable pediatric populations, in partnership with the Institute for Healthcare Improvement.

Learning from Justin's tragedy, working with healthcare providers/students to make care safer and kinder and assisting families healing from harm are Dale Ann's goals.



Stephanie Newell
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 Press
Founder, Patient Commando Productions

Zal 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.

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.



Kathy Torpie
International Keynote Speaker, Psychologist, Author and Long Term Multi-trauma Patient


Kathy was an active, independent woman in excellent health when she suffered life threatening, multi trauma injuries in a car accident. She woke up in intensive care on life support. Terrified, confused and feeling diminished, Kathy found herself trapped in a broken body in an alien environment that spoke in a language she didn't understand. She was totally dependent, even for her most personal needs, on strangers.

Kathy remained in a hospital bed, unable to stand for nearly four months. Following discharge, she had to coordinate dozens of surgeries, involving multiple disciplines over a period of seventeen years, as well as arrange home help, insurance and social services. She experienced some exemplary care over the course of her recovery, and some both physically and emotionally traumatic. Her overall patient experience, combined with her ability to see the whole picture provided Kathy with important insights about the nature of the patient experience and what constitutes quality healthcare. She has since shared her story and insights in inspirational keynote presentations in New Zealand, Australia, Europe, the United States and Canada. She was a steering committee member for a national project to optimize the patient experience in New Zealand and is currently a steering committee member for policy and advocacy with the Australasian College of Health Service Management (ACHSM).

Her book, Losing Face; A Memoir of Lost Identity and Self Discovery (Harper Collins, N.Z) is an insightful narrative of her medical and personal journey of recovery that offers a deeply intimate view of the patient experience. She recently authored a chapter for a text book on patient stories.

 


Naomi Williams
Patient Advisor, Georgia Health System

Naomi Williams has served as a patient advisor, on behalf of her son, with the Children's Hospital of Georgia since January 2010. In addition to serving on the Family Advisory, Neuroscience and OR quality control councils, she is a member of the Family Faculty program. Naomi holds a bachelor's of science degree in health and physical education from Augusta State University and in 2008 she earned a master's in public health from Walden University. Naomi is also a Certified Health Education Specialist (CHES) and Certified Intrinsic Coach (CIC).

Understanding the importance of meeting people where they are came natural for Naomi. Her years of working as a patient liaison and community outreach manager with high risk women and infants enrolled in the Enterprise Community Healthy Start program, became very real and personal when she became a high risk mother, just like the women and families she served; an experience which intensified her passion for patient advocacy.

As the parent of a special needs child, Naomi is passionate about helping families manage their decisions and navigate systems associated with special needs. She is a trainer for Parent to Parent of Georgia, co-coordinator for the Children's Hospital of Georgia A-team (autism) support group, columnist for the Augusta Medical Examiner and the Family Support Coordinator for the Children's Hospital of Georgia and Georgia Regents Cancer Center resource libraries.

 
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