Alicia Staley serves as vice president of Patient Engagement at Medidata. She oversees the Patient Insights Program and the Patient Insights Board. She works to infuse the patient perspective throughout the product development lifecycle and help engage patients in novel ways. She created Patient Centricity by Design (PCbD) in 2018 as a way to provide structure and governance for developing patient-centric technical solutions.
Alicia is also a three-time cancer survivor, first diagnosed with Hodgkin’s disease as a sophomore during college. With an extensive network of patient advocates and non-profit organizations, she collaborates with a wide range of stakeholders to help improve processes and policies that impact cancer care.
As a champion of patient advocacy and engagement, she understands the critical issues facing patients seeking to engage in clinical research.
Alicia has over 20 years of experience in software design and information systems management. Prior to joining Medidata, Alicia worked at Cure Forward leading their patient engagement and community initiatives to help advance clinical research. An early adopter of social media, she co-founded #BCSM, which attracts over 250 global participants each week to its scheduled online discussions. Since its launch in July 2011, #BCSM has been showcased at SXSW in 2013, 2014, 2015, and again in 2017. This foundational online social media support channel is recognized as the gold standard for disease-specific social media networks.
She is the 2019 eyeforpharma Patient Champion award winner for her extensive patient advocacy and engagement work. She truly understands the critical issues facing patients seeking to engage in clinical research. With a keen focus on improving access to clinical trials, Alicia is passionate about making a difference for patients seeking clinical trials.
In 2021, Alicia won the CHI SCOPE Participant Engagement award for her work on Medidata’s Patient Centricity by Design initiative. Leveraging the classic design thinking framework, Alicia and her team developed a methodology for surfacing key insights from a patient’s clinical trial journey and transforming those insights into software development elements. This methodology is utilized to deliver world class experiences to patients on Medidata supported clinical trials.
She has co-led numerous research studies on how patients share information in online forums and has published numerous research papers on patient engagement and the need for patient-centric approaches to the design and development of clinical trials. She has a Mechanical Engineering Degree from Syracuse University and a Masters of Information Systems and an MBA from Boston University.