Marie Abraham, MA, is Vice President for Programming and Publications at the Institute for Patient- and Family-Centered Care. She provides consultation to health systems, hospitals, and ambulatory care practices to advance patient- and family-centered care; develops key publications, videos, and resources; plans IPFCC educational events; and leads and consults on a variety of projects focused on creating partnerships with patients and families. Prior to joining IPFCC in 1996, Marie worked as a developmental specialist in hospital- and community-based settings.
Genevieve Allen is a first year medical student at the University of Michigan. Prior to starting medical school, Genevieve worked in HIV prevention and education as a Peace Corps volunteer in Zambia. She became interested in patient, family, and provider communication as a result of her work in HIV and her experiences at a rural health center in Zambia. As a student in the new first year medical student course, Doctoring: Caring for Patients, Families and Communities, Genevieve has attended several volunteer patient-family advisor (VPFA) panels and has experienced how patients can be valuable mentors through home and clinic visits with a VPFA. Genevieve looks forward to working with and learning from patients and families throughout the rest of her medical school education and beyond.
Kate Balzer is a volunteer patient advisor with the University of Michigan Health System (UMHS) serving on Radiation Oncology and Family Medicine advisory councils and participating as advisor facilitator for the UM Medical School PFCC Orientation curriculum. Kate became involved in UMHS's PFCC Program after she was treated for Hodgkin's lymphoma during her social work graduate studies. Kate is interested in working with care providers to help develop and support PFCC behaviors and build empathic partnerships with patients and families. Most recently, Kate joined the PFCC staff at UMHS as a project coordinator, providing project and administrative support to the PFCC team.
Upon receiving less than adequate health care that resulted in life threatening experiences, Patty Black, developed a passion for the patient/provider partnership and the voice of the patient. She has used these experiences to help her in her role as the Program Coordinator for Patient Centered Care, Coordinator of the Patient Advisory Council and shadow coach for healthcare providers for PeaceHealth Medical Group in Eugene, Oregon. She has served on the clinical council, quality committee, and patient safety council as well and has partnered with many national organizations involved with patient engagement. She is a member of the Oregon State Task Force for developing standards for patient-centered primary homes as well as patient-centered behavioral health medical homes. Patty has served as a technical assistant for AF4Q, as an IHI national patient advocate and is on the faculty of IPFCC. Currently, she is working with the Oregon Association of Hospitals and Health Systems on a patient and family engagement collaborative
Stacy Brand is the outreach manager for the Transplant Center at the University of Michigan Health System in Ann Arbor, Michigan. In her current role, she plans and oversees clinical outreach activities to help enhance awareness of the referral base and promote growth of the center. She is responsible for outreach to referring physicians and dialysis centers throughout Michigan, manages the development and implementation of continuing medical education symposiums, leads the kidney transplant peer mentor program, helps with administrative needs for the other organ peer mentor programs, and coordinates patient education materials. In 2012, Stacy started the Kidney Transplant Recipient Peer Mentor program at the University of Michigan and revitalized the Kidney Living Donor Peer Mentor Program and the Liver Peer Mentor program. Stacy holds an MBA from Wayne State University in Detroit, Michigan and a bachelor of arts from the University of Michigan in Ann Arbor, Michigan.
Krista Rosa Brennan a Patient & Family Partner for Stanford Health Care, has over 20 years experience as a non profit executive, high tech curriculum developer and professional software instructor. Her eclectic skill set structures her unique storytelling capability to apply her personal experience as a cancer survivor to professional settings across all healthcare departments. Krista came to Stanford Healthcare in 2012 as an unexpected patient in the cancer center when she was diagnosed with non-Hodgkin's lymphoma while 21 weeks pregnant. She successfully went through cancer treatment and delivered a healthy baby girl and continues to be cancer-free. Krista currently sits on the Stanford Cancer Center's Patient Family Advisory Council and has been a member since 2013. Although her experience is mostly professional, her most fulfilling accomplishments to date are raising her two beautiful daughters, thriving thought cancer treatment, and using her patient experience to bring the "care" back into healthcare.
Bryant Campbell has been a Patient and Family Advisor for over five years at Providence Medical Group in Portland, Oregon. He has helped develop patient-centered medical home processes, procedures, and animated media communications. Bryant has a chronic condition that requires ongoing self-management in order to maintain and enhance his wellness. He understands the important role that his health care team, family, and community play in supporting his health goals.
He has presented the patient experience at several conferences, webinars, and forums. He was featured on the State of Oregon Health Authority's website for his involvement in this work. Currently, Bryant serves on both Providence's Executive Patient and Family Advisory Council and his local outpatient clinic’s council. He has been instrumental in positively influencing change and transformation in health care across these settings.
Maureen Connor, RN, MPH, is a health care consultant with Claremont Healthcare Consulting in Arlington, Massachusetts, focusing on quality improvement, patient safety and patient- and family-centered care. Previously, in the position of Vice President for Quality Improvement and Risk Management at the Dana-Farber Cancer Institute (DFCI) in Boston, Maureen played a major role in integrating patient safety into the culture of DFCI, collaborating with patients and family members from DFCI’s patient and family advisory councils. She has worked with the Massachusetts Coalition for the Prevention of Medical Errors to assist health care organizations throughout the Commonwealth in implementing state mandated patient and family advisory councils. Maureen was a co-author of the publication, When Things go Wrong: Responding to Adverse Events, written to support the Harvard affiliated hospitals in communicating with patients and families about medical errors and adverse events.
Liza Cooper, LMSW, provides leadership for Child and Family Education and the Senior Family Advisor program as part of the Sala Institute for Child and Family-Centered Care at the Hassenfeld Children’s Hospital of New York at NYU Langone. In her role, Liza collaborates with clinicians, young patients, and families to develop unique and meaningful educational resources throughout pediatrics and ensures that patients and families are partners in safety and quality initiatives. With two decades of experience in healthcare, Liza combines social work, program development and health literacy expertise with a deep belief that healing comes from true partnership among patients, families and clinical teams. Liza is a published author and national speaker on the subject of patient- and family-centered care with specific expertise designing innovative education and support programs for newborns, children, families and healthcare professionals that enhance the experience of care.
Katie Darcy has been a patient with NYU Langone Medical Center’s Institute for Plastic Surgery for the past twenty years, beginning at one-year-old. Katie has a passion for improving pediatric patient care and in 2014 joined the Family Advisory Council. In 2016 Katie went on to become a Senior Family Advisor and uses her personal experience to support patients and families in pediatric outpatient units, provide valuable perspectives on safety committees and improve Child and Family Education materials. Katie is also a Nursing and Global Public Health Student at the NYU College of Nursing.
Deborah Dokken, MPA, is currently a consultant to IPFCC. Deborah's career in family advocacy grew out of her own personal experiences, including the loss of two infants due to prematurity and her husband's long battle with a rare abdominal cancer. As a result, Deborah became involved in programs that improve family support and enhance family participation in health care.
Deborah was the Associate Director of the Initiative for Pediatric Palliative Care (IPPC). She co-founded the nonprofit, community-based organization Partners in Intensive Care, and was a founding member of the Parent Partners Group at The George Washington University Hospital. Deborah has been a member of committees of the Institute of Medicine, the Food and Drug Administration, and the National Institutes of Health. At Sibley Memorial Hospital in Washington, DC, she is a member of the Patient and Family Advisory Committee. She is also co-editor of the Family Matters section of Pediatric Nursing journal, the co-author of several articles related to family-centered and pediatric health care, and has presented at many conferences.
Jill Golde, MS, is a Partner in Language of Caring. For over 15 years, Jill has been helping healthcare organizations embrace and strengthen patient- and family-centered communication. Jill brings over 20 years of experience in organizational change and the patient experience. With her appreciative focus, Jill is an inspiring, effective coach and team-builder—helping internal people plan and implement with focus, efficiency and enthusiasm.
Jill holds an MS in Organization Development from American University and a BA in Education from Washington University. For Language of Caring, Jill is responsible for Marketing and Sales and also works directly with clients on Language of Caring program implementations.
Terry Griffin, MS, APN-BC, is a neonatal nurse practitioner at St. Alexius Medical Center in Hoffman Estates, IL. She has worked at Rush University Medical Center in Chicago and has held faculty positions at the Graduate College of Nursing at the University of Illinois at Chicago. Her clinical experience is in the NICU as a staff nurse, Clinical Nurse Specialist, and most recently, as a Neonatal Nurse Practitioner; however, her specialty is patient- and family-centered care. Terry's area of interest is the relationship among staff, patients, and families. She has authored several publications on this topic.
Libby Hoy, has had 20 years of experience navigating the healthcare system as the mother of three sons living with mitochondrial disease. She began volunteering as a 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. Libby strives to build the infrastructure and capacity for healthcare organizations to engage all patients and families, from the bedside to the boardroom.
In 2010, Libby founded PFCCpartners to create a community of patients, families, providers and health care organizations committed to the shared learning of Patient & Family Centered Care practice. PFCCpartners also supports the PFANetwork, inclusive of more then 450 Patient Family Advisors working in healthcare settings across the country to partner for improvement in the quality, safety, experience and the design of healthcare.
Beverley H. Johnson, President and CEO, Institute for Patient- and Family-Centered Care, provides technical assistance and consultation to advance the practice of patient and family-centered care in hospitals, health systems, federal, state, provincial agencies, military treatment facilities, and community organizations. She assists hospitals and ambulatory programs with changing organizational culture, facilitation of visioning retreats, and the integration of patient and family-centered concepts in policies, programs, and practices, quality improvement, patient safety, as well as in facility design and the education of health care professionals. Bev served on the Selection Committee for the American Hospital Association-McKesson Quest for Quality Prize and is currently a member of the Board of Directors for the Patient-Centered Primary Care Collaborative (PCPCC).
Lindsay Lang, MHSA, RN, currently serves as a senior health care quality improvement specialist at the National Partnership for Women & Families. In this role, she guides health care organizations as they implement a collaborative patient and family engagement model of care in which patients and families work in partnership with clinicians and staff to redesign health care delivery.
Ms. Lang joined the National Partnership with 15 years of experience within the health care industry, including caring for patients as a registered nurse in oncology, hematology and dialysis care settings at the University of Kansas Hospital; supporting staff nurses as a nurse manager of inpatient neurosciences unit at Froedtert Hospital in Wisconsin; and most recently as a senior director at the National Quality Forum, focusing on improving quality through the use of performance measurement in health care settings. She received her Bachelor of Science in Nursing (BSN) from the University of Iowa, and earned a Master of Health Services Administration (MHSA) at the University of Kansas.
Dr. Kerry Litman MD, CPPS is a Family Physician, Physician Quality Director at the Kaiser Permanente San Bernardino County Medical Center, and physician lead for PFCC in the Kaiser Permanente Southern California region. Kerry has given presentations on quality and patient engagement at Kaiser Permanente National Quality Conferences, the Institute for Healthcare Improvement's National Forums, the Beryl Institute, IPFCC and elsewhere. He was founder and is physician co-chair of the Kaiser Permanente Southern California Regional Member Advisory Council since 2012, physician founder of the KP Fontana Patient Safety Advisory since 2009, and KP Southern California Video Storytelling program physician champion since 2014. In 2016 he was a co-recipient of the KP Vohs Quality Award for his ‘e-Autopsy’ program; focused mortality reviews that identify improvement opportunities. Kerry also helped develop other programs at his medical center including the Weekly Farmers’ Market, Physician Hiking Club, Healthy Catering Program and ‘Patient In The Room’ video series.
Roslyn Marshall, RN, BSN, MHSA, is the Nurse Manager of the Neuroscience Center at the Augusta University Medical Center in Augusta, GA. She is responsible for the day-to-day management of the neuroscience service line and has been a leader for patient- and family-centered care at her organization.
Jason MacLeod is a Patient Advisor for Providence Health Care, specifically the Patient and Family Advisory Committee for the Eating Disorders Department at St Paul's Hospital.
He lives in Vancouver, BC, Canada and has struggled with Bulimia Nervosa over the last 18 years. Since quitting drinking in 2009 and starting intensive Eating Disorder treatment in 2010, his life has changed from one in chaos, to a life in recovery and learning. Seeking help for his struggles with Bulimia, opened the door to accept and begin healing from a lifetime of mental illness and abuse. The last six years of his life have been focused solely on recovery and getting his life on track.
Becoming a member of the Advisory Committee, has been a life changing experience. Through the Committee he was able to attend the IPFCC International Conference in Vancouver, which was a major milestone in both his recovery, and his life.
He believes that having the opportunity to give back to others struggling with Eating Disorders and other Mental Illnesses, as well as to the staff and management, of the Tertiary Eating Disorders Program at St Paul's Hospital, has been truly amazing.
Mary Minniti, CPHQ, is the Senior Policy and Program Specialist at the Institute for Patient- and Family-Centered Care (IPFCC). She provides onsite training and technical assistance to health care organizations, develops publications and resources, and serves as faculty for IPFCC’s seminars and conferences.
Over the past 20 years, she has found meaningful ways to transform the health care experience in partnership with patient and family advisors and clinical improvement teams. She served as the Quality Director for a multi-specialty practice and supported transformational changes including piloting new care models including patient-centered medical home implementations and community wide collaboration to improve chronic care management. Her passion is bringing patients and family members into conversations about health care transformation because of the positive and powerful impact it creates for all involved.
Julie G. Moretz, BS, is the Associate Vice Chancellor for Patient- and Family-Centered Care at the University of Arkansas for Medical Sciences. In this role, Julie works on projects to develop partnerships among health care professionals, patients, and families. As the mother of a young son with complex congenital heart disease requiring a dozen heart surgeries, Julie partnered with her health care organization to develop a nationally recognized patient- and family-centered care program. After working with the Institute for Patient- and Family-Centered Care for nearly seven years, she assumed the position of associate Vice Chancellor for Patient- and Family-Centered Care at the University of Arkansas for Medical Sciences.
Kelly Parent, BS has more than a decade of experience leading patient and family engagement efforts across clinical, education, research, and quality and safety venues. In 2006, Kelly began volunteering as a Family Advisor at C.S. Mott Children’s Hospital in Michigan and was then hired as the first PFCC Program Manager at Michigan Medicine. Kelly also served as family faculty and consultant for IPFCC and was hired as Program Specialist for Patient and Family Partnerships in 2015. Currently as the Vice President for the Patient and Family Experience at Beaumont Health System, Kelly is leading efforts to create high quality, safe, and satisfying experiences for patients and families across the health care continuum.
Liz Salmi is the OpenNotes Senior Multimedia Communications Manager. She’s also a patient who does not have access to her notes. After receiving a brain cancer diagnosis one week after her 29th birthday, Liz began blogging about her patient experience. From 2008 to 2016, her 500 blog posts (or “patient notes”) mirror her 4,800-page medical record. Liz is featured in The Open Patient: Healing Through Sharing, a documentary about patients seeking access to their own health data. Liz comes to OpenNotes from the Coalition for Compassionate Care of California where she was Director of Communications. She is a 2017 fellow of the Salzburg Global Seminar, a 2016 TEDMED Frontline Scholar, and 2016 Stanford Medicine X e-Patient Scholar. Liz serves on the Patient Advisory panel for the BMJ, the Medical Advisory Board for the National Brain Tumor Society, and is a patient reviewer for the Patient-Centered Outcomes Research Institute (PCORI).
Dr. John Santa, MD, MPH played a leadership role in starting the Northwest OpenNotes Consortium, and he now directs national dissemination efforts. He has over 40 years of experience in clinical medicine and administration, having worked in leadership positions for hospitals, physician groups, insurers and state government. Before coming to OpenNotes, he was Medical Director for the Drug Effectiveness Review Project, one of the country’s most robust comparative effectiveness programs, as well as the Director of the Health Ratings Center at Consumer Reports from 2008 to 2014. The Ratings Center focuses on explicit approaches evaluating and comparing health services, products, institutions and practitioners. John practiced primary care internal medicine from 1976 to 1992 and 2003 to 2008 and is currently a Board member and Treasurer of the National Physicians Alliance. He has taught in multiple venues—introductory courses to clinical medicine, resident courses in public health and preventive medicine and health policy courses.
Leilani Schweitzer did not choose a career in health care; it chose her. Eleven years ago her son died after a series of medical mistakes, now she works in Risk Management at the same hospital where those errors happened. In her work with Stanford Healthcare's Risk Management, she uses her own experience with medical errors to navigate between the often insular, legal and administrative sides of medical error; and the intricate, emotional side of the patient and family experience. Her work with The Risk Authority gives her a unique view of the importance and complex realities of disclosure and transparency in health care.
Perry Spencer, CPP, CHPA, has worked in University of Michigan's Health System and Hospitals Security Department since 1997 and currently serves as the department’s director. Prior to that, Perry served 20 years in the United States Air Force, retiring in 1995. Perry has been an advocate of patient- and family-centered care in health care security, authoring two articles on Security’s role in patient- and family-centered care in the healthcare security professional journal, Protection. In 2010, Perry received the Annual HOPE Award for his ongoing commitment to patient- and family-centered culture change at the University of Michigan.
Perry holds a Bachelor’s degree from Park University in Management and a Master’s Degree in International Relations from Troy University.
Deborah Wachenheim, MPP helps to spread the implementation of OpenNotes across the country as part of the OpenNotes dissemination team. She has a background in consumer engagement in health care. Prior to OpenNotes, she worked at Health Care For All, engaging consumers in speaking up about the need to improve the quality of health care. She also oversaw the successful consumer campaign to mandate that all Massachusetts hospitals establish Patient and Family Advisory Councils (PFACs) and then she developed a statewide PFAC network to provide technical assistance and resources to PFACs in Massachusetts. Deborah previously worked at Jewish Vocational Service of Greater Boston, where she developed and ran a food stamp outreach and education program. Before that she coordinated a campus social justice program through the Jewish Community Relations Council of Greater Boston. Deborah also worked at RESOLVE, the national infertility organization, as the Director of Government Relations.
Patty Yoon, RPN, MA, is a Program Manager in the Mental Health and Urban Health Department at Providence Health Care in Vancouver, BC, Canada. She has over 20 years of experience working in mental health. She oversees two Tertiary Mental Health Programs: Eating Disorders and Neuropsychiatry and in January 2017, she will also be adding the Geri-Psychiatry Unit to her portfolio. She is passionate about improving patient and family care by engaging them in sharing (hearing) their lived experiences to drive change. Patients and families are actively engaged as members of the Tertiary Mental Health Leadership Committee (Neuropsychiatry) and the Tertiary Eating Disorders Program Patient and Family Advisory Committee.
Given that the care needs are incredibly diverse throughout the Mental Health and Urban Health Department, she is keenly interested in understanding ways that produce sustainable and meaningful changes for patients and families; this includes ensuring that care providers are the champions for the most stigmatized, vulnerable and marginalized population.