Engaging older adults in the process of aging research: a multimethod study evaluating the experience and efficacy of a citizen advisory group for a dementia risk reduction program
Authors: D’Amico Danielle , Savundranayagam Marie Y. , Biles Rose , Itzhak Inbal , Anderson Nicole D. ,   for the Canadian Consortium on Neurodegeneration in Aging (CCNA) CAN-THUMBS UP Study Group, Chertkow Howard , Belleville Sylvie , Feldman Howard H. , Montero-Odasso Manuel , Nygaard Haakon , Anderson Nicole , Banks Sarah , Das Samir , Evans A. Carol , Ferland Guylaine , Furlano Joyla A. , Hofer Scott , Itzhak Inbal , Jacobs Diane , Jarrett Pamela , Lim Andrew , McGibbon Chris , Messer Karen , Revta Carolyn , Robillard Julie , Smith Eric E. , Speechley Mark , Walker Jennifer , Borrie Michael , Rockwood Kenneth , Brewster Paul , Centen Andrew , Cuesta Marc , Chan Senny , Durant January , Herold Tatiana , Kamkar Nellie , Lupo Jody-Lynn , Sarquis-Adamson Yanina , Slack Penelope , Trigui Amal , Winer Shahnaz , Ajwani Fatim , Alrohimi Anas , Anderson Nicole , Arsenault-Lapierre Geneviève , Aubin Gabrielle , Belleville Sylvie , Bethell Jennifer , Bherer Louis , Bouchard Maude , Boulos Mark I. , Burt Jacqueline , Butt Asif Javed , Camicioli Richard , Campos Jennifer , Carrier Julie , Chertkow Alison ChasteenHoward , Crockett Rachel A. , Cuesta Marc , D’Amico Danielle , Daneault Véronique , Dang-Vu Thanh , Desautels Alex , Desrosiers Caroline , Dumassais Shirley , Dwosh Emily , Einstein Gillian , Fahnestock Margaret , Falck Ryan Stanley , Feldman Howard H. , Ferland Guylaine , Fiocco Alexandra , Gagnon Christine , Gagnon Jean-François , Galea Liisa , Ganesh Aravind , Gervais Nicole , Gilbert Brigitte , Gosselin Nadia , Grégoire Catherine-Alexandra , Harold Tatiana , Huang Stephanie , Hughes Catherine , Itzhak Inbal , Joundi Raed , Keller Heather , Klekovkina Elizaveta , Quang Kim Lasnier-Le , Laurin Danielle , Liu-Ambrose Teresa , Lorenzini Marie-Céline , Lorrain Dominique , Mahalingam Kaljani , Maltezos Sarantia Samantha , Mankasingh Brooklyn , Marple Roger , Marzolini Susan , Mehrabi Samira , Mick Paul , Middleton Laura , Mollayeva Tatiyana , Montero-Odasso Manuel , Moore Annabelle , Moussard Aline , Mundadan Reanne , Murphy Kelly , Noltie Leigh-Anne M. , Nygaard Haakon , Orange J. B. , Parolin Emilie , Phillips Natalie , Pichora-Fuller Kathy , Piquette Lori , Plaks Jason , Postuma Ron , Pratt Avery , Rajah Maria Natasha , Raptis Helli , Regan Kayla , Julien-Rocheleau Anne , Savundranayagam Marie Y. , Slack Penelope , Smith Eric E. , Speechley Mark , Sullivan Kylie , Sultana Munira , Tangkhpanya Fatima , Tcherkezian Talar , Tessier Anne-Julie , Verty Lynn Valeyry , Wagner Amanda , Wittich Walter , Yamin Stephanie , Zadra Anthonio , Evans Alan , Das Samir , Abou-Haider Rida , Acosta Rolando , Beaudoin Camille , Henri-Bellamare Charlie , Callegaro Jessica , Heshmati Milad , Mohades Zia , Soo Pierre Pac , Gauthier Serge , Feldman Howard H. , Greenberg Barry , Herrmann Nathan , Lanctot Krista , McLaurin Joanne , Nygaard Haakon , Territo Paul , Weaver Donald , Wellington Cheryl , Alcock Danielle , Almeida Quincy , Best Sarah , Blue Korbin , Celotto Isabella , Cole Lauren , Dixon Roger , Dodge Hiroko , Duchaine Caroline , Elhayek Nada , Field Thalia , Haassenstab Jason , Haché Josée , Hamilton Andrew , Hsiung Robin , Moniz Lauren , Omar Hanin , Pauley Chris , Robinson Bryn , Samson Ève , Sands Jenna , Sexton Andrew , Shajan Sheetal , Sharma Sachie , Sidrak Mariam , Thomas Carol , Truemner Julia , Yetman Linda , Zou Guangyong , McKetton Larissa 
Published: December 2024

Background

Collaborative research with end-users is an effective way to generate meaningful research applications and support greater impact on practice and knowledge exchange. To address these needs, a Citizen Advisory Group (CAG) of nine older adults (ages 64–80, 67% women) was formed to advise scientists on the development of Brain Health PRO (BHPro), a web-based platform designed to increase dementia prevention literacy and awareness. The current study evaluated if the CAG met its objectives, how inclusion of the CAG aligned with collaborative research approaches, and the CAG’s experience and satisfaction throughout the development process.

Methods

An anonymous online survey was administered to the CAG members and 30 scientist/trainee authors of the BHPro chapters. The CAG also participated in an online focus group.

Results

Most CAG members and chapter authors agreed that the CAG met its primary objectives and added unique value to BHPro. Both groups viewed the CAG’s involvement as well-aligned with engaged scholarship, co-production, integrated knowledge translation, and, to a lesser extent, participatory research practices. CAG members reported high satisfaction with personal goal attainment, which included learning, collaborating with others, and making a meaningful impact. Content analyses of the focus group revealed three categories: 1) personal benefits related to learning, connection, and feeling valued, 2) value of a masked peer-review process, and 3) an accessible final product.

Conclusions

Findings suggest that collaborating with end-users in the process of aging research confers personal and scientific benefits for both older adults and researchers.