Authentic Patient Engagement

Alex has spent more than 10 years working at the crossroads of reentry systems and lived experience with serious mental illness. He works as a Behavioral Health Program Manager managing a portfolio of programs, initiatives and contracts that improve access to mental and behavioral health care treatment and recovery supports. Additionally, Alex is also the Co-Founder of the Doctoral and Postdoc Health Equity and Policy Scholars Support Network, a community of Doctoral-level Scholars focused on advancing health equity through lived experience and innovative policy development.

Alex is currently a third-year Doctor of Public Health (DrPH) student at Tulane University Celia Scott Weatherhead School of Public Health and Tropical Medicine and a Fellow in the Robert Wood Johnson Foundation Health Policy Research Scholars program at Johns Hopkins Bloomberg School of Public Health. His research focuses on lived experience with mental illness and substance use to improve state and federal mental and behavioral healthcare policies, helping reduce disparities and create better outcomes for people seeking care.

Alex has brought his lived experience leadership perspective to mental health and patient advocacy work at local, state, national, and global levels. He has been honored to have worked with organizations such as Valley Cities Behavioral Health Care, King County, WA, all levels of NAMI (local, state, and national), Camden Coalition, American Public Health Association, Foundations for the National Institutes of Health, and Global Mental Health Peer Network. He believe that meaningful policy change happens when it is rooted in equity, dignity, and guided by individuals with lived or living experience.

Desiree Collins-Bradley is a resident of Houston, Texas. Her passion is patient and family engagement in healthcare and ensuring that patient’s voices are always represented at all levels of shared decision-making. 

She is a mother of three wonderful children.  Her daughter was born with a genetic disorder Jarcho Levin Syndrome. It is extremely rare and often carries a very high mortality rate and grim prognosis. Her medical journey has inspired her to become an advocate not only for her daughter but in the medical community. She believes in the pillars of family-centered care, and it is her passion to spread the importance and awareness of them. She has become involved in several committees at the hospital, including the Newborn Center Family Advisory Committee, of which she was the Co-chair and one of the founding members. She is also a Family Leader Faculty for the Vermont Oxford Network, which focuses on NICU improvement projects globally. She is also the Project Coordinator for Project DOCC Houston, a nonprofit organization focusing on the importance of partnerships between physicians and families of those taking care of a chronically ill or disabled family member. She currently manages a very interactive patient network PPIC, Patient Partner Innovation Community of over 3,000 members across the country. Her goal is to inspire other patients and caregivers to become activated in their healthcare communities. She is a strong advocate for patient populations at most social risk. She has worked on several SDOH, Social Determinants of Health initiatives with the National Quality Forum. Through their partnership, she has participated in panel discussions at congressional briefings in Washington, DC. She is passionate about health equity and has been able to exercise that passion through membership as a strategic advisor for AMA’s Rise to Health Coalition.  

 Joseph Washington, PharmD, MS, MPH is a Manager in Market Access Commercialization at Cencora (formerly AmerisourceBergen). In this role, he supports several mid to large biopharmaceutical companies to drive formulary access for their assets. His responsibilities include leading scientific direction and tactical development of projects in diverse disease areas. 

Dr. Washington started his career at Cencora with a Health Outcomes and Market Access fellowship. Prior to joining Cencora, Dr. Washington served in both policy and public health roles. In the 117th Congress he led the distribution strategy for COVID-19 vaccines across Florida District 9. And he worked at the Centers for Disease Control and Prevention in the Division of Diabetes Translation. 

Dr. Washington received his Doctor of Pharmacy in conjunction with his Master of Public Health degree from the University of Florida. During that time, he served as the National President of the Student National Pharmaceutical Association and was honored with the Townes R. Leigh Award for leadership. He also completed a Master of Science degree in Pharmaceutical Outcomes and Policy, with a concentration in applied pharmacoeconomics, from the University of Florida. 

Maanya Tarnal is a junior at the University of Michigan, pursuing a degree in Public Health and Psychology. With a strong interest in health equity, she is passionate about improving patient engagement and advocacy within the healthcare system. Her goal, in her professional career, is to address systemic disparities, enhance the quality of care and ensure individuals - especially those in underserved communities - have access to affordable, reliable and patient-centered services.  

Diagnosed with epilepsy at the age of 16, Maanya initially struggled to navigate life with her condition. This personal experience shaped her understanding of the challenges patients face. Three years after her diagnosis, she began volunteering at the Epilepsy Foundation of Michigan, where she found her passion: public health. 

Professionally, Maanya has dedicated herself to advancing patient-centered initiatives. In 2023, she interned with the Epilepsy Foundation of Michigan, leading the creation, distribution and analysis of the 2023 Michigan Epilepsy Needs-Based Assessment, ensuring the patient voice was central to understanding community needs. This past summer, she expanded her work nationally as an intern with the Epilepsy Foundation of America, assisting the Multicultural Outreach and Health Equity department. There, she developed a comprehensive plan for a pilot seizure training program, identifying practical ways to implement it on college campuses to better engage and support students living with epilepsy. 

Maryjan Fiala is an entrepreneurial-minded educator with more than fifteen years of experience working with diverse adult learners. She has been teaching undergraduate business courses for community colleges for more than ten years, most recently within her state’s correctional system. To complement graduate degrees in adult, occupational, and continuing education and organizational management, Maryjan is pursuing a PhD in adult learning and leadership. Her research interests focus on the construction of knowledge among patients/families and healthcare professionals, reflecting her dedication to advancing patient and family engagement across health systems. Maryjan’s commitment to patient and family advocacy was inspired by her youngest son's complex medical journey. After an extremely premature birth and nearly 19 months inpatient, he transitioned to home, still requiring ventilator support and around-the-clock care. Building from her lived experience, Maryjan strives to elevate patient and family perspectives locally, regionally, and nationally.  

After experiencing a health crisis from an adverse response to medication used to treat eczema, Kelly was propelled into the world of advocacy. Her passion to support those suffering as she had, led her to serve on several national and international dermatology non-profits, bringing awareness to the great needs of the eczema and TSW communities in academic, regulatory and political arenas. 

Kelly serves as president of the Coalition of Skin Diseases, a group of national non-profit skin-related patient groups, which advocates for the 84+ million Americans living with skin conditions. She also serves on the Board of Directors of the patient advocacy group, ITSAN, and sits on the Patient Advocacy and Drug Transparency Task Forces of the American Academy of Dermatology and the Atopic Eczema Advisory Group for Globalskin. 

Beth Mathews-Bradshaw oversees the Alliance’s Talk NERDY clinical research training program and the Accelerate Cures/Treatments for All Dementias (ACT-AD)/FDA Allies meeting, as well as assists with other Alliance health care training initiatives and public policy work. She has decades of experience in the regulatory, health, and public policy sectors. Prior to starting at the Alliance she worked for the Life Sciences Division of Leidos, managing regulatory affairs contracts for the National Institutes of Health and supporting the United States Army Medical Research and Development Command in strategic health planning, policy, and regulatory work.  She has an A.B. degree from Mt. Holyoke College in English and Politics, and graduate course-work in regulatory affairs at Hood College.

Stephanie Marshall is the Director of Patient Advocacy for The Assistance Fund (TAF), an independent charitable patient assistance organization that provides financial assistance to patients living with life-threatening, chronic, and rare diseases.  

With more than 25 years policy, advocacy, and communications experience in the public, private, and non-profit sectors, Stephanie has devoted her entire career to improving health and quality of life for individuals, families, and communities. At TAF, she collaborates with patient advocacy organizations to ensure TAF’s programs and services meet the needs of patients and caregivers.

Kistein Monkhouse, a public health advocate and former frontline healthcare worker, is the founder of Patient Orator, a digital platform aiming to improve patient-provider communication and tackle health disparities. Her work extends to award-winning documentary production, including "Humanizing Health Care" and "The Cost of Abortion Bans." Beyond entrepreneurship, Monkhouse actively contributes to various not-for-profit boards, advocating for health equity and amplifying the patient voice. 

Richard (“Rick”) Seiden practiced healthcare transactional law at Foley & Lardner’s Los Angeles office from 1983-2019, where he served on the Management Committee and as Managing Partner of the firm’s California offices from 1996-2003.  He has been a long-time Board member, former Chair and patient advocate for the National Psoriasis Foundation (“NPF”).  Among other health care volunteer activities, Rick serves on the Patient Advisory Board and Steering Committee for the American Joint Replacement Registry (“AJRR”), and is a long-time board member of the Barlow Respiratory Hospital in Los Angeles. Rick has published a number of patient education articles for NPF, AJRR and WebMD. 

Adam Thompson is an independent consultant supporting health systems, communities, and patients to improve health outcomes.  He holds a bachelor’s degree in Theology from Georgetown University and will graduate in December of 2022 with his Masters in Public Health from the Jefferson College of Population Health where he was named the 2022 Public Health Student of the Year. He is currently the Co-Chair of the Primary Care and Chronic Disease Standing Committee for the National Quality Forum where he also serves on the Board of Directors.  He is 2010 recipient of the Leadership in Quality Award from CQII and the HIV/AIDS Bureau.  He co-developed several national trainings for Ryan White communities including the Training of Consumers on Quality, the Building Leaders of Color, and ELEVATE & ESCALATE programs. Mr. Thompson is the former Regional Partner Director for the South Jersey AIDS Education and Training Center and brings over 17 years of experience in health care improvement and patient engagement. 

Danny van Leeuwen, Opa, RN, MPH, is a 2-legged, cisgender, old, white man of privilege known as Health Hats with Multiple Sclerosis, committed to health equity and learning and sharing what works for best health. He serves people who help others by leveraging his privilege and experience as a person with disabilities, nurse, care partner, informaticist, and quality management leader to open seats at the table of healthcare governance, design, operations, and research for under-represented and under-served communities. Danny is especially interested in building capacity for successful community-research partnerships. Danny is a podcaster, vlogger (https://linktr.ee/healthhats), and technical and subject matter expert for measure and app development, pain management, and AI use in health decision-making. Danny is on the Board of Governors of the Patient-Centered Research Institute (PCORI). He hosts mastermind groups for solo entrepreneurs, podcasters, not-for-profit board members, and those advancing patient industry partnerships. Danny plays baritone saxophone in a Latin Band and Dixieland Band in his spare time. 

Diagnosed with non-radiographic Axial Spondyloarthropathy and various co-morbidities, Tiffany Westrich-Robertson has served as Chief Executive Officer since 2011. Under her leadership, she has spearheaded innovative, award winning projects, all based on patient-identified issues and patient-infused solutions.

In 2015, she led the Ethics of Step Therapy Investigation and authored the associated white paper, which concluded preferred drug recommendations are biased towards patients who meet general patient population standards. As a result, she advocates for legislation that considers individual needs, with focus on access to personalized and precision medicine, access, and value assessments. Additionally, she speaks regulatory to legislators about the importance of biomarker access in non-cancer groups and plans to toggle this work into the new AiArthritis Research Data Bank to gain information to further influence policy.

Tiffany is well-respected in the healthcare community, serving on several committees in both policy and research, including with the American College of Rheumatology, OMERACT (Outcome Measures in Rheumatology), Innovation Value Initiative (IVI), and the Institute for Clinical and Economic Review (ICER) Health Equity and methods revisit committee. Her previous roles included Vice President of Business Development & Project Management at a top architectural firm and college professor, with concentrations in advanced design, Business Development, and Project Management. She was nominated for Teacher of the Year in 2007 and the winner in 2008 as voted on by the student body. She also holds an advisory board seat on the Missouri State University Design Thinking program, helping other executives execute projects in a systematic, yet creatively innovative, manner.