Tully Saunders1, Thomas I Mackie2, Supriya Shah1, Holly Gooding3, Sarah D de Ferranti3, Laurel K Leslie1,4. 1. Institute for Clinical Research & Health Policy Studies, Tufts Medical Center, Boston, MA, USA. 2. Institute for Health, Health Care Policy & Aging Research, Rutgers University, New Brunswick, NJ, USA. 3. Boston Children's Hospital, Boston, MA, USA. 4. Tufts Clinical & Translational Science Institute, Boston, MA, USA.
Abstract
AIM: Explore perspectives of adolescent and young adult (AYA) and parent stakeholders regarding their engagement in comparative effectiveness research (CER) evaluating cholesterol screening and treatment strategies for 17-21 year olds. METHODS: All nine AYAs and parent stakeholders participating in a 20-member panel of AYAs, parents and professionals (i.e., clinicians, researchers, policy makers, payers), completed a quantitative survey and a semistructured interview at the completion of the core CER study. RESULTS & CONCLUSION: AYAs and parents stakeholders emphasized the role of power differentials regarding shared knowledge, relationships and trust, and logistics. To mitigate power differentials, stakeholders recommended more materials, clearer definition of roles and in-person meetings. Perceived positive outcomes included diversity of perspectives provided, better understanding their own health and decision-making and improving CER.
AIM: Explore perspectives of adolescent and young adult (AYA) and parent stakeholders regarding their engagement in comparative effectiveness research (CER) evaluating cholesterol screening and treatment strategies for 17-21 year olds. METHODS: All nine AYAs and parent stakeholders participating in a 20-member panel of AYAs, parents and professionals (i.e., clinicians, researchers, policy makers, payers), completed a quantitative survey and a semistructured interview at the completion of the core CER study. RESULTS & CONCLUSION: AYAs and parents stakeholders emphasized the role of power differentials regarding shared knowledge, relationships and trust, and logistics. To mitigate power differentials, stakeholders recommended more materials, clearer definition of roles and in-person meetings. Perceived positive outcomes included diversity of perspectives provided, better understanding their own health and decision-making and improving CER.
Authors: Charles R Elder; Lynn L Debar; Cheryl Ritenbaugh; Maureen H Rumptz; Charlotte Patterson; Allison Bonifay; Penney Cowan; Lindsay Lancaster; Richard A Deyo Journal: Perm J Date: 2017
Authors: Rachel Hemphill; Laura P Forsythe; Andrea L Heckert; Andrew Amolegbe; Maureen Maurer; Kristin L Carman; Rikki Mangrum; Lisa Stewart; Ninma Fearon; Laura Esmail Journal: Health Expect Date: 2019-12-04 Impact factor: 3.377