Vanessa L Merker1, Andrés J Lessing2, Irene Moss2, Maureen Hussey2, Beverly Oberlander2, Traceann Rose2, Raquel Thalheimer2, Tracy Wirtanen2, Pamela L Wolters2, Andrea M Gross2, Scott R Plotkin2. 1. From the Center for Healthcare Organization and Implementation Research (CHOIR) (V.L.M.), Edith Nourse Rogers Memorial Veterans Hospital, Bedford; Department of Neurology and Cancer Center (V.L.M., R.T., S.R.P.), Massachusetts General Hospital, Boston; Neurofibromatosis Northeast (A.J.L.), Burlington, MA; Children's Tumor Foundation (I.M., M.H., T.R.), New York, NY; Neurofibromatosis Inc. California (B.O.), Vacaville; Neurofibromatosis Network (B.O.), Wheaton, IL; Littlest Tumor Foundation (T.W.), Appleton, WI; and Pediatric Oncology Branch (P.L.W., A.M.G.), National Cancer Institute, National Institutes of Health, Bethesda, MD. vmerker@mgh.harvard.edu. 2. From the Center for Healthcare Organization and Implementation Research (CHOIR) (V.L.M.), Edith Nourse Rogers Memorial Veterans Hospital, Bedford; Department of Neurology and Cancer Center (V.L.M., R.T., S.R.P.), Massachusetts General Hospital, Boston; Neurofibromatosis Northeast (A.J.L.), Burlington, MA; Children's Tumor Foundation (I.M., M.H., T.R.), New York, NY; Neurofibromatosis Inc. California (B.O.), Vacaville; Neurofibromatosis Network (B.O.), Wheaton, IL; Littlest Tumor Foundation (T.W.), Appleton, WI; and Pediatric Oncology Branch (P.L.W., A.M.G.), National Cancer Institute, National Institutes of Health, Bethesda, MD.
Abstract
OBJECTIVE: As part of an evaluation of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration patient representative program, we surveyed REiNS members to (1) identify facilitators and barriers to involving patient representatives and (2) understand whether and how involving patient representatives affected recommendations for clinical trial outcomes. METHODS: We administered an anonymous online survey to all REiNS members. Facilitators and barriers to patient representative involvement were solicited using a modified free listing technique; responses were inductively grouped into higher-order categories and ranked based on saliency score (Smith s). Open-ended questions assessed patient representative expectations for engagement, perceived benefits/costs of patient engagement, and patient representative contributions; responses were analyzed using conventional content analysis. RESULTS: A total of 63/172 (37%) members responded, including 18/30 (60%) patient representatives. Providing sufficient opportunities to meaningfully engage in research tasks and cultivating a respectful, inclusive atmosphere were key facilitators to patient representatives' satisfaction and ability to make an impact. Respondents perceived that patient representatives directly (through their input on research tasks) and indirectly (through effects on other stakeholders' knowledge and communication style) improved the organization's research, leading to selection of more meaningful, relevant, and feasible clinical trial outcome measures. Ongoing challenges to patient engagement include difficulty scheduling meetings and concerns about the level of scientific knowledge patient representatives needed to effectively engage. CONCLUSIONS: Involving patient representatives in REiNS improved perceived quality of neurofibromatosis clinical trial outcome measures. Negotiating sufficient opportunities to engage, fostering an inclusive atmosphere, and navigating time pressures are key to effective patient engagement.
OBJECTIVE: As part of an evaluation of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration patient representative program, we surveyed REiNS members to (1) identify facilitators and barriers to involving patient representatives and (2) understand whether and how involving patient representatives affected recommendations for clinical trial outcomes. METHODS: We administered an anonymous online survey to all REiNS members. Facilitators and barriers to patient representative involvement were solicited using a modified free listing technique; responses were inductively grouped into higher-order categories and ranked based on saliency score (Smith s). Open-ended questions assessed patient representative expectations for engagement, perceived benefits/costs of patient engagement, and patient representative contributions; responses were analyzed using conventional content analysis. RESULTS: A total of 63/172 (37%) members responded, including 18/30 (60%) patient representatives. Providing sufficient opportunities to meaningfully engage in research tasks and cultivating a respectful, inclusive atmosphere were key facilitators to patient representatives' satisfaction and ability to make an impact. Respondents perceived that patient representatives directly (through their input on research tasks) and indirectly (through effects on other stakeholders' knowledge and communication style) improved the organization's research, leading to selection of more meaningful, relevant, and feasible clinical trial outcome measures. Ongoing challenges to patient engagement include difficulty scheduling meetings and concerns about the level of scientific knowledge patient representatives needed to effectively engage. CONCLUSIONS: Involving patient representatives in REiNS improved perceived quality of neurofibromatosis clinical trial outcome measures. Negotiating sufficient opportunities to engage, fostering an inclusive atmosphere, and navigating time pressures are key to effective patient engagement.
Authors: Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde Journal: J Biomed Inform Date: 2008-09-30 Impact factor: 6.317
Authors: Antoine Boivin; Tessa Richards; Laura Forsythe; Alexandre Grégoire; Audrey L'Espérance; Julia Abelson; Kristin L Carman Journal: BMJ Date: 2018-12-06
Authors: Rachael Fleurence; Joe V Selby; Kara Odom-Walker; Gail Hunt; David Meltzer; Jean R Slutsky; Clyde Yancy Journal: Health Aff (Millwood) Date: 2013-02 Impact factor: 6.301
Authors: Juan Pablo Domecq; Gabriela Prutsky; Tarig Elraiyah; Zhen Wang; Mohammed Nabhan; Nathan Shippee; Juan Pablo Brito; Kasey Boehmer; Rim Hasan; Belal Firwana; Patricia Erwin; David Eton; Jeff Sloan; Victor Montori; Noor Asi; Abd Moain Abu Dabrh; Mohammad Hassan Murad Journal: BMC Health Serv Res Date: 2014-02-26 Impact factor: 2.655
Authors: Trisha Greenhalgh; Lisa Hinton; Teresa Finlay; Alastair Macfarlane; Nick Fahy; Ben Clyde; Alan Chant Journal: Health Expect Date: 2019-04-22 Impact factor: 3.377
Authors: Sandra L Carroll; Gayathri Embuldeniya; Julia Abelson; Michael McGillion; Alexandre Berkesse; Jeff S Healey Journal: Patient Prefer Adherence Date: 2017-09-13 Impact factor: 2.711