title: HIV, breast cancer and vaccines: what do high-profile cases reveal about stakeholder engagement in research?
abstract: Substantially engaging stakeholders in research involves making extensive changes to the full life cycle of research, from the initial stage of selecting research priorities to the final stages of dissemination and implementation. Recent scholarship has explored logistical and methodological challenges, including the time, training and resources required for engagement. However, inadequate attention has been given to the intended ends or goals of engagement - what do we want engagement to achieve? An examination of historical case studies can yield important insights regarding engagement and its intended ends. Using historical perspective methods, we explore how clarity about the ends of engagement can inform the design of engagement efforts and lead to better outcomes. We present several lessons for improving stakeholder-engaged research.
authors: Center for Medical Ethics & Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 310D, Houston, TX 77030, USA.
authors: Stephanie R
authors: SR
authors: Morain
authors: The RAND Corporation, 20 Park Plaza, Suite 20, Boston, MA 02116, USA.|Tufts University School of Medicine, Boston, MA, USA.|Tufts Clinical & Translational Science Institute, Boston, MA, USA.
authors: Thomas W
authors: TW
authors: Concannon
authors: Center for Health Decision Science, Harvard T.H. Chan School of Public Health, 718 Huntington Avenue, 2nd Floor, Boston, MA 02115, USA.
authors: Eve
authors: E
authors: Wittenberg
mesh_terms: D035843:Biomedical Research; D001943:Breast Neoplasms / Q000517:prevention & control*; D005260:Female; D015658:HIV Infections / Q000517:prevention & control*; D006801:Humans; D000073597:Stakeholder Participation; D014612:Vaccines / Q000627:therapeutic use*
chemical_list: D014612:Vaccines
keywords: HIV/AIDS; breast cancer; health policy; health services research/methods; patient engagement; population health; research; stakeholder engagement; vaccination