STAR Advisory Council (SAC), consists of patients, community members, and clinicians who help prioritize research opportunities and review all incoming studies to ascertain engagement of patients. Input from stakeholders is used to inform the research design, implementation, analysis, dissemination and/or priority setting. The SAC review of research products entails a quantitative, objective and validated measure of the Person Centeredness of Research (PCoR) score. This measurement tool is the first of its kind and available to other Networks within STAR for measuring.
As a Sickle Cell Disease patient, Alexis believes in empowering the sickle cell patients and caregivers with the knowledge and information to live productive lives and works regularly with other organizations interested in learning more about living well with sickle cell disease. Alexis ‘experience and leadership has contributed to science as a STAR-CRN Advisory Council Stakeholder, PCORI Merit Review Panel Member, PCORI Studio Transcript Reviewer, and Rare Disease Legislation member.
For more information, click here.
Deb has been an active advocate for ensuring proper care for older adults since the beginning of her professional career in 1978. In her position as Program Director of Outreach for the Wake Forest Sticht Center for Healthy Aging and Alzheimer’s Prevention, she is able to further align her talents and skills with her personal passion for serving the needs of our community’s elders. In this role she works with a wide array of community organizations and religious institutions that allow her to effectively reach older adults throughout the greater Winston-Salem area and started the AgingWell Series, a highly successful monthly educational event, designed specifically for older adults, that delivers meaningful, health-related information in an easily understood format.
For more information, click here.
Thomas has an extensive background in customer service and as a patient with a long medical history, he possesses a great amount of experience and knowledge of healthcare and healthcare systems in his role on the STAR Stakeholder Advisory Council. He is currently enrolled in a Cardiovascular Technologist Program and aims to be a strong patient advocate.
For more information, click here.
Personal insight on how a Sickle Cell patient is treated and feels during the process of being in the ER, admitted to the hospital, and receiving out-patient services long term has been a unique journey within healthcare systems. Cheslie’s experiences have been of great suffering, self-education, advocacy, triumph, and understanding. Quality of care for patients like Cheslie, who are ill, misunderstood, and underserved within the healthcare community has become a new passion in her life. Being a lifelong patient, who is sharing her story, has been essential in serving on several organizations allowing her experiences to not be in vain and hopefully helped incorporate change for all patients.
Lyle is the founder and co-chair of the University of North Carolina’s Patient & Family Advisory Board. He is the Chief Financial Officer (CFO) of Cloud Pharmaceuticals, Inc., a pioneer, and leader in silico drug design using artificial intelligence and the massive computing resources of the cloud. Previously he was with AAI Pharmaceuticals, Inc., initially as CFO and then CEO. AAI was a global Clinical Research Organization (CRO) operating in Stage 1 to 3 drug research, drug formulation, solid and sterile drug manufacturing, and lab operations.
For more information, click here.
Richard’s personal experiences have engendered a desire to spread the information people need from studies and other sources to inform their own healthcare decisions. He is a patient partner on the PCORI NLP for Clinical Data Reuse and currently serves at the governance level as a STAR Leadership Team Patient Representative. Richard’s career as a privacy and security consultant provides a much-needed perspective on patient data safety.
During his career, Bob has always been concerned with the behavioral and mental health of students, which is often overlooked as a cause of school failure and the inability of youth to successfully integrate into the larger society. As a PCORI Ambassador and behavioral researcher/statistician, Bob has years of experience investigating health issues.
For more information, click here.
Russ is a trained molecular endocrinologist and journalist who completed my career as a science writer and laboratory researcher focusing primary on issues pertinent to cancer. Russ served in roles that were communication links between researchers, physician staff, and patients, and interacted with patient survivors, advocate groups and the staff at the Mayo Clinic Cancer Center. He brings his career experiences has allowed him to understand the importance of the patient voice for the development and directional shaping of patient-based research and patient/survivor input to study design.