The National Center for Interprofessional Practice and Education is delighted to welcome Patient Responders to the Nexus Summit 2023. These individuals will attend plenary and seminar sessions, and share feedback from their unique perspectives, ensuring the patient voice continues to be represented as we learn together through our conversations and as an interprofessional community at the Nexus Summit. These Patient Responders come from across the nation, with varied experiences and a shared commitment to improving the patient experience by influencing the systems of care and learning around them.
The Nexus Summit 2023 Patient Responders will also help shape the plenary on September 28 “From a Patient’s Perspective: Reflections, Ideas and Action Steps to Build Meaningful Patient Engagement.”
Click on a Patient Responder below to learn more.
My name is Cameron Rankin. I am a patient, an active patient partner and a research subject for various projects as well as a scorekeeper for men's hockey and elite youth hockey. My life as a patient began in November 2004 when I ruptured a disk and tore the sheath on my spine leaking spinal fluid. I had surgery and they were unable to decompress my spine which resulted in nerve damage. After two years I was able to walk with braces and canes. In June 2006, I discovered I had pressure sores on both heels, one healed, and one got MRSA, a superbug. After that was years in Hospital VRE, another superbug, hundreds if not thousands of clinic and home visits, and 22 surgeries - the last of which was a lower left leg amputation. That brings me up to date. Except to say I now live in one of the best areas in the country for services to those with spinal cord injuries.
I am here as a patient partner to help you understand the patient's perspective in health care as well as give you my perspective on health care workers. I think the most important thing in a health care worker is kindness, be it putting a blanket on a feverish patient even though you both know it isn't going to work or watching an Olympic gold medal game with a patient while you wait, asking a patient in isolation if they need anything, getting the tv lady to come etc. But it is hard to say one thing is the most important thing in healthcare. Being able to trust the team you are entrusting with your health is also very important and I was not the most trusting at times. It is impossible to say what is most important in healthcare at any one time some would say right at this moment it is the members of the healthcare team. As a patient in the hospital the most important thing in healthcare is what is happening to you right now.
Cynthia is committed to fighting mental health stigma. She has direct service expertise managing chronic health conditions, disability, and substance use/abuse as well as advocating for addiction recovery. Cynthia advocates for everyone seeking to learn how to live life on life’s terms without the use of mind-altering or mood-changing substances that change their reality into non-reality. Cynthia wants to inform providers and system leadership about the challenges of pain management and chronic illness for consumers with substance use disorder as well as give back to her community in the form of increasing support for individuals living with multiple health challenges. Cynthia was born and raised in Houston, Texas, and has lived in Berkeley, CA since 1970.
Helene Lieberman has been a pediatric Occupational Therapist for over 30 years. Despite being a healthcare provider, when my mother had a stroke in 2008, it was quite a challenge navigating the health care system and partnering with her various medical health care providers. This only got worse as her health declined and she was diagnosed with Alzheimer's. With lots of phone calls, emails and visits to advocate for my mother, the providers came to understand that I understood my mom best and wanted to work with, not against them, to get the best possible outcomes.
In addition, I have a son who died at 24 years old of Fentanyl and Fentanyl analogue poisoning. Dealing with his lifelong mental health issues and subsequent substance abuse meant learning about mental health and educational systems to help him best. Mental health and substance abuse affected our family more than my mother's long battle with Alzheimer's. This is a battle that was lost, but there is so much to share with others.
Italia Folleco is a therapist, educator, and couples group facilitator. She volunteers at Joe DiMaggio Children’s Hospital and is the current chair of the Patient & Family Advisory Council, and a member of the hospital's Behavioral Health Committee. Italia holds a bachelor’s degree in Psychology from Bloomfield College, a master’s degree from Kean College in Counseling Psychology, and earned a post-masters certificate and completed doctoral work at Nova Southeastern University in Systemic Marriage and Family Therapy. Italia’s passion for helping families facing life’s greatest challenges stems from her journey as a parent who lost her 12 yo daughter to the side effects of chemotherapy for the treatment of Osteosarcoma, a rare childhood cancer. Italia was the recipient of the "2023 Spirit of Healing Award" from Joe DiMaggio Children's Hospital, an award that recognizes excellence, community service, and a commitment to the hospital system.
Jamal Brown is an inspirational community member, father, coach, and mentor who strives to set a good example for the next generation. He was inspired to do this work because he knows what it is like not to have the type of encouragement he now gives to others. Jamal is an active member of Camden Coalition’s Community Advisory Committee and Housing First group, an alumni of the National Consumer Scholar program, and a Camden County NuEntry Opportunity Specialist where he helps people who are leaving incarceration to integrate back into society and not feel alone. In 2019 he shared testimony at the New Jersey State House of Representatives to support passage of a bill to improve access to state IDs and driver’s licenses. In his free time, Jamal enjoys playing video games, reading the Bible, and spending time with positive people.
Janice Tufte was born and raised in Seattle, Washington. She has also resided in Wisconsin, Minnesota, California, Vermont, and New Mexico. She attended college in Washington, Minnesota, and California, with a focus on sociology and special education.
She serves as a patient research advisor on the University of Washington Centers for Comparative and Health System Effectiveness CERTAIN project, is a public panel member for the American College of Physicians, and serves on the National Quality Forum’s Measure Application Partnership Coordinating and Risk Adjustment Committees. She also serves on the GRAVITY Project’s Executive Committee and is an advisory member for the National Center for Complex Care and Social Needs.
Tufte has a passion for connecting communities, organizations, and individuals to one other. She is an expert at taking learned best practices and information gained from one organization or institution and sharing that important knowledge with others at diverse levels. She currently presents as an individual to college classes, on panels, and at medical conferences. She has participated on large international research projects and conference planning committees and continues to review abstracts for research conferences, bringing the patient partner voice to the review process and the events themselves.
Tufte has initiated and nurtured six Puget Sound community-based projects, addressing the social determinants of health and disparities, combining poverty awareness with volunteer-based opportunities. She is currently involved with evidence-based work, measurement panels, and guidelines participation, with health systems improvement as her priority area. She has been a PCORI Ambassador since 2014 and has attended Annual Meetings and presented at the 2017 preconference. She has received multiple scholarships related to integrating the patient partner voice and is active in Ambassador activities.
Kateryna Metersky, who is currently an Assistant Professor at Toronto Metropolitan University and a registered nurse in General Internal Medicine at the Toronto Western Hospital - University Health Network, has been a patient-partner with Centre of Advancing Collaborative Healthcare and Education (CACHE) since Fall 2022. Kateryna experienced a sudden onset of an illness in Spring of 2019 that has since become chronic in nature. Kateryna is also a caregiver to a child who has a severe form of epilepsy and a parent who has a significant number of co-morbidities. These life circumstances have required consistent and ongoing interactions with a variety of healthcare providers and organizations, some of which have been positive, while others have presented significant challenges.
These challenges have included a diminishing of Kateryna's voice as a patient and family member/caregiver or involvement in decision making, lack of sufficient care coordination and navigation support, poor inter and intra-personal communication, to name a few. In her role at CACHE, but also as a nursing professional, Kateryna shares, publishes on, writes poetry about, and disseminates her experiences, struggles, and successes to her nursing and health professions students and colleagues, other patients and caregivers/family members, and wider audiences so that current and future healthcare providers can learn with, from, and about Kateryna to enhance care delivery for their current and future patients.
Kelly Loyd is a volunteer patient and family advisor at the Medical University of South Carolina (MUSC) in Charleston. She comes to this work as the mom of 16 year old twin girls who were born almost three months early. Their prematurity resulted in extensive stays in the Neonatal Intensive Care Unit at MUSC - 77 days for one and 31 days for the other. For almost 12 years, Kelly has partnered with care team members across the MUSC Health system to promote a culture of patient- and family-centered care. She has accumulated almost 4,000 volunteer hours serving on Patient and Family Advisory Councils, writing and reviewing patient-facing documents, collaborating on quality and safety initiatives, and participating in the design of new facilities.
Maryjan Fiala is a dedicated advocate for families of young children who experience recurring or extensive hospitalization. Maryjan’s youngest son was born 17 weeks premature and spent nearly 19 months inpatient between two hospital systems. At the time of his second discharge, her son was ventilator and feeding-tube dependent and required continuous monitoring and care. Maryjan is committed to using her lived experience and professional background in adult learning to enhance patient-provider interactions and parent-provider communication. When sharing her perspective as a parent, Maryjan emphasizes patient-centered care, empathetic and compassionate communication, and cultivating mutual trust. Through the adult learning lens, Maryjan offers insights into the learning journey that begins when a parent is catapulted into the realm of critical health care and the scaffolding necessary for that parent to thrive as an informed advocate and caregiver for their child with chronic illness. In addition to sharing elements of her son’s journey with local medical students and resident physicians, Maryjan has co-presented at regional and national conferences for clinical and allied health providers. She looks forward to providing detailed feedback on presentations to support patient and family engagement.
Miguel Rodriguez is a Consumer Scholar and Community Ambassador with the Camden Coalition. He met the Camden Coalition in 2013 when in the hospital for bypass surgery. At the time, Miguel was experiencing homelessness and substance use disorder, as well as mental and physical health issues from childhood trauma and years of drug use. After Miguel was released back to the streets, the Camden Coalition assisted him with housing, transportation and a phone, which empowered him to begin recovery.
Miguel’s homelessness began in 2012 when his family moved from New Jersey to Philadelphia, leaving him without a place to stay. His friends were also using and were unreliable. He says “When you’re an addict, you develop health issues, mental health, and trust issues. But the Coalition came around and started helping as I went through every phase of recovery… I’ve been with them since 2013.”
Miguel is a Community Ambassador, advocating for and educating his community on health issues like Obamacare and COVID-19. He has also spoken in Washington, DC on the importance of access to healthcare. He says, “My neighbors trust me because they know where I came from and how far I have come.”
Sarah has spent her life navigating the healthcare system as a patient. As a result, she has seen the benefits of family and professional partnerships firsthand. She was a Family Leader for Boston University’s Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN). She is one of the coauthors of The Health Resources & Services Administration’s (HRSA) Blueprint for Change. Connect with Sarah though her website: http://www.sarahkperkins.com/index.html
Naomi D. Williams is a perfectly imperfect person on a mission to empower individuals and families to live their best life, now. As a Life Doula, she helps people navigate and process major life altering events. Naomi believes anyone and everyone can and should lead an exceptional life. She is the proud mother of a former 26-week preemie who lives with a host of diagnoses that fall under the primary umbrella of spastic quadriplegia cerebral palsy. She uses her and her son’s past and present experiences to inform and partner with healthcare systems as they live out the consequences of not being considered a valuable member of their care team. Naomi is the author of And God Remembered: A mother’s heart-opening journey through 22 weeks in the NICU. When not advocating for her family or others, you can find Naomi getting lost exploring nature or taking a deep breath on her yoga mat.
Rebecca Monsoor Cassidy is a community representative for caregivers to the Minnesota Northstar Geriatrics Workforce Enhancement Program (MN GWEP). Becky has been a caregiver to her two parents who had Alzheimer’s and her brother who has a brain injury and is exhibiting early signs of dementia. In this role, Becky has been involved in caring for her family members at home and, eventually, advocating for them in the nursing homes they were placed in after living at home was no longer possible. She also advocates for education and policy reform for the nursing assistant workforce that cares for those in nursing homes, all for the purpose of better care for patients in nursing home care.
As Becky says, “In the process of caregiving, you get lost. You lose your sense of balance… you can suffer depression and physical injury.” She advocates for psychosocial and physical support for caregivers and improved education and working requirements for nursing assistants.
The Call for Patient Responders has closed. You may explore the Call for Patient Responders here.