Patient Community Recommendations to Pharma on Enhancing Clinical Research Initiatives

Gary Ho is a co-founder of the Gout Support Group of America and also holds the position of Senior Community Director at TREND Community. He is committed to advocating for gout patients and the rare disease community. Mr Ho's strong leadership and empathy have played a crucial role in raising awareness and providing support. He brings his professional expertise in healthcare advocacy to empower patients and launch impactful awareness campaigns. Through his efforts, he has significantly contributed to improving healthcare outcomes.

Diagnosed in her teens, Sabina Kineen is passionate about educating others how the diagnosis of an inherited, rare disease can impact an entire family and sharing the unique perspective of living as both a patient and a caregiver. Ms Kineen strives to use her own life experiences, including her involvement and participation in clinical trials, to support patients and industry in order to build bridges and encourage health equity and patient engagement.

Stacey Langley is a devoted advocate for patient rights and improved healthcare experiences. With a background as a community health worker and peer recovery specialist, she brings a unique perspective on patient advocacy. Having personally navigated physical disability, autoimmune disease, behavioral health, and recovery, Ms Langley understands the significance of empowering individuals to become active participants in their healthcare journey. She firmly believes that every patient deserves a voice and that collective advocacy can drive meaningful change. For over a decade, Ms Langley has been an active participant in various campaigns in the LGBTQ+, progressive, and low-income communities, all aimed to improve patient outcomes, amplify patient voices, and address systemic issues in healthcare. Beyond her advocacy work, Ms Langley is also a sought-after speaker known for inspiring and educating diverse audiences. Originally from Houston, Texas, and having spent over a decade in the New York City area, she currently resides near Martinsburg, West Virginia. Ms Langley holds an AAS in Information Systems from Pierpont Community and Technical College and a certificate in Community Health from Berkeley City College.

Rucha Shah has been living with a rare disorder. Her commitment lays in advocating for accessible healthcare and improving health outcomes for the broader patient community, especially the next generation of patients. Currently, Ms Shah leads a patient advocacy group for patients and caregivers at the Children’s Hospital of Philadelphia and the Hospital of University of Pennsylvania. She also collaborates with various national organizations and pharmaceutical companies on bringing forth initiatives which make meaningful connections within the disease community, improve the quality of life for patients and to increase awareness within the larger community. Ms Shah attained her Master of Science degree in Clinical Research Organization and Management from the Drexel University School of Medicine in Philadelphia, PA. She further completed certificate coursework in Advancing Health Equity from ECOG-ACRIN Cancer Research Group and Research Advocacy Network as well as certificate coursework in Artificial Intelligence in Pharma and Biotech from the Massachusetts Institute of Technology. Professionally, Ms Shah works as a clinical research project manager within the oncology space. She strives to apply the "lessons learned" from her patient advocacy experiences to her professional work by building the trials to be more patient centric and accessible. Recent Works: Woolford T, Andemariam B, Blaylark R, Colasanti R, Shah N, Jonassaint C, Trimnell C, Sheth S, Davis J, Gallagher E, Zaidi AU, John H, Shah R. Setting Industry Standards for Patient Engagement, Partnership and Care: The Patient Vision Project. Poster and Oral presentation at NORD. October 16, 2023. Washington DC, USA.

Desirée A. H. Walker was diagnosed with breast cancer at age 38 with a recurrence at 47. Her diagnoses motivated her to become a patient advocate to share her talents and aid diverse communities. She uses her platform to be a voice for the voiceless and pay it forward by educating and empowering people around the world. She serves as Young Survival Coalition’s Board President and is a member of the National Coalition for Cancer Survivorship’s Cancer Policy Advocacy Training; the Society of Integrative Oncology’s Patient Advocate and the Health Equity, Inclusion and Belonging Committees; and the NCI SWOG Recruitment and Retention and Patient Advocate Committees, among many others. She also facilitates support groups for women of African descent who are dealing with breast and gynecological cancers. Ms Walker has appeared on ABC World News with Dr. Richard Besser, CBS with Dana Tyler, NBC’s TODAY Show, The Good Fight with Pat Battle, Here and Now with Sandra Bookman, The Breakfast Club with DJ Envy, Angela Yee and Charlamagne Tha God and NBC’s Weekend Today in New York. She is a graduate of the National Breast Cancer Coalition’s (NBCC) Project LEAD®. As a patient and research advocate, she brings her experience to a team of cancer researchers at Columbia University’s Mailman School of Public Health, the University of Wisconsin-Madison, Memorial Sloan-Kettering Cancer Center and Weill Cornell Medicine. She feels blessed to enjoy time with family and friends and bakes gourmet bread pudding. She is a foodie, enjoys traveling, the performing arts and sporting events.

Ash Rishi is founder and CEO of COUCH Health, a global creative health engagement agency that serves to make health research inclusive. Its focus covers a range of solutions, including patient insights and engagement through to recruitment and retention within health research. Mr Rishi has over 15 years of experience in the industry, navigating the diverse needs of big pharma through to smaller biotech companies. With experience that covers the full medicine lifecycle, from pre-clinical to lifecycle management, his passions lay in working to make research more inclusive and has founded Demand Diversity a non-profit in 2023.