4 Works

Stakeholder engagement in eight comparative effectiveness trials in African Americans and Latinos with asthma

Tiffany Dy, Winifred J. Hamilton, C. Bradley Kramer, Andrea Apter, Jerry A. Krishnan, James W. Stout, Stephen J. Teach, Alex Federman, John Elder, Tyra Bryant-Stephens, Rebecca J. Bruhl, Shawni Jackson & Kaharu Sumino
Abstract Background The effects of stakeholder engagement, particularly in comparative effectiveness trials, have not been widely reported. In 2014, eight comparative effectiveness studies targeting African Americans and Hispanics/Latinos with uncontrolled asthma were funded by the Patient-Centered Outcomes Research Institute (PCORI) as part of its Addressing Disparities Program. Awardees were required to meaningfully involve patients and other stakeholders. Using specific examples, we describe how these stakeholders substantially changed the research protocols and in other ways participated...

Stakeholder engagement in eight comparative effectiveness trials in African Americans and Latinos with asthma

Tiffany Dy, Winifred J. Hamilton, C. Bradley Kramer, Andrea Apter, Jerry A. Krishnan, James W. Stout, Stephen J. Teach, Alex Federman, John Elder, Tyra Bryant-Stephens, Rebecca J. Bruhl, Shawni Jackson & Kaharu Sumino
Abstract Background The effects of stakeholder engagement, particularly in comparative effectiveness trials, have not been widely reported. In 2014, eight comparative effectiveness studies targeting African Americans and Hispanics/Latinos with uncontrolled asthma were funded by the Patient-Centered Outcomes Research Institute (PCORI) as part of its Addressing Disparities Program. Awardees were required to meaningfully involve patients and other stakeholders. Using specific examples, we describe how these stakeholders substantially changed the research protocols and in other ways participated...

Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial

Brett D. Thombs, Brooke Levis, Marie-Eve Carrier, Laura Dyas, Julia Nordlund, Lydia Tao, Kylene Aguila, Angelica Bourgeault, Violet Konrad, Maureen Sauvé, Kerri Connolly, Richard S. Henry, Nora Østbø, Alexander W. Levis, Linda Kwakkenbos, Vanessa L. Malcarne, Ghassan El-Baalbaki, Marie Hudson, Amanda Wurz, S. Nicole Culos-Reed, Robert W. Platt & Andrea Benedetti
Abstract Background More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively...

Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial

Brett D. Thombs, Brooke Levis, Marie-Eve Carrier, Laura Dyas, Julia Nordlund, Lydia Tao, Kylene Aguila, Angelica Bourgeault, Violet Konrad, Maureen Sauvé, Kerri Connolly, Richard S. Henry, Nora Østbø, Alexander W. Levis, Linda Kwakkenbos, Vanessa L. Malcarne, Ghassan El-Baalbaki, Marie Hudson, Amanda Wurz, S. Nicole Culos-Reed, Robert W. Platt & Andrea Benedetti
Abstract Background More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively...

Registration Year

  • 2022
    4

Resource Types

  • Collection
    4

Affiliations

  • San Diego State University
    4
  • University of Quebec at Montreal
    2
  • Keele University
    2
  • University of Pennsylvania
    2
  • University of Washington
    2
  • Research Canada
    2
  • Radboud University Nijmegen
    2
  • McGill University
    2
  • Washington University in St. Louis
    2
  • University of Illinois at Chicago
    2