Jacqueline Alikhaani
California
Born in the American Heartland of Arkansas, Jacqueline Alikhaani is a Los Angeles based Heart Survivor / Patient / Volunteer Advocate. She is a graduate of the University of Southern California, a PCORI-American Heart Association Organizational Ambassador, Citizen Scientist, American Heart Association 2019-20 KDBH (Know Diabetes by Heart) education/awareness Campaign Ambassador, and WomenHeart Champion - serving as a volunteer community healthcare advocate to help improve programs/services for all healthcare consumers/patients, family members, and caregivers.
She is a survivor of a rare congenital cardiovascular condition diagnosed in approximately 1 in 17 million people. Misdiagnosed for 48 years - she knows first-hand, the challenges faced by those living with chronic, disabling and/or potentially life-threatening medical conditions. Stating that when doctors told her she was lucky to be alive, it was a beaconing call. So, with the help of her husband and son, she decided to use her 2nd chance in life to help increase awareness, education and support targeting heart health and patient centered care and research in whatever ways possible. “I believe that life should not be lived by luck - it takes deliberate informed decisions and proactive actions. This led to my decision to use my personal health experiences to serve as a healthcare research advocate and volunteer Citizen Scientist Architect-of-Change to help advance more patient-centered healthcare and socio-economic outcomes that help improve daily quality of life issues throughout our communities especially for those experiencing chronic, disabling and/or life-threatening medical conditions - so we can all survive, thrive and lead the most productive lives possible - and celebrate as many great birthdays as possible. Life is why…”
As a PCOR (Patient-Centered Outcomes Research) Engagement Patient-Partner/ADAPTOR, she serves as a patient-consumer representative for several PCORI (Patient-Centered Outcomes Research Institute) PCORnet and other Comparative Effectiveness Research projects.
As an African-American, mother, and guardian of a family member with multiple disabilities, Ms. Alikhaani has significant lived-experience with balancing affordable healthcare, gaps-in-care, and a variety of socio-economic concerns.
Having served as a Patient/Consumer Representative amplifying the patient voice on PCOR research teams to help custom design and implement innovative study models to better harness and advance the power of Big Data and Small Data – she is excited about the growing possibilities and has learned a lot about the advantages of technology combined with traditional research approaches to better collect and apply PROs (Patient-Reported Outcomes) and critically improve diversity and equity in ways that can advance critical medical research like never before, especially for highly marginalized segments of our communities such as rare disease patients. As a result, her interests now include global Patient-Centered Outcomes Research engagement to help improve clinical knowledge-base and rare disease patient registries, share and exchange best practices & resources and collaborations around the world to better aide patients and other healthcare consumer stakeholders.
Honored to serve and self-empowered by her lived-experience and her family's ongoing tradition of international community service, she is an IVCLA-International Citizen Diplomat for the City of Los Angeles. Ms. Alikhaani serves as an FDA Advisory Panel Consumer Representative. Other, current and past community healthcare volunteer leadership engagement includes the QIN-NCC(Quality Innovation Network - National Coordinating Center) Beneficiary and Family-Member Advisory Council, American Heart Association/American Stroke Association National Quality Improvement Advocacy Consumer Task Force, International Cochrane Collaborative, IEEE Healthcare Apps Standards Committee, AARP/Real Possibilities, President’s Advisory Council for the National Patient Advocate Foundation, and more than 17 years as a past board member for a network of FQHC (Federally Qualified Health Centers) as well as being a veteran of several other nonprofit boards and committees, including the National Association of Community Health Centers. Additionally, she loves writing, is a consumer/patient co-author and has worked in editorial capacities on international academic research journals in polymer physics, accounting, finance, auditing, computer science, robotics, and automation. She holds a BA from the University of Southern California and is an MBA candidate at a local University.