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Exploring the Acceptability and Feasibility of Conducting a Large Longitudinal Population-Based Study in Canada*

Published online by Cambridge University Press:  01 September 2009

Susan A. Kirkland ,
Parminder S. Raina ,
Christina Wolfson ,
Geoff Strople ,
Olga Kits ,
Steven Dukeshire ,
Camille L. Angus ,
Karen Szala-Meneok ,
Jennifer Uniat  and
Homa Keshavarz
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Susan A. Kirkland*
Affiliation:
Department of Community Health and Epidemiology, Dalhousie University Department of Medicine, Dalhousie University
Parminder S. Raina
Affiliation:
McMaster Evidence-based Practice Center, McMaster University Department of Clinical Epidemiology and Biostatistics, McMaster University
Christina Wolfson
Affiliation:
Division of Clinical Epidemiology, McGill University Health Centre Department of Epidemiology & Biostatistics and Occupational Health, and Department of Medicine, McGill University
Geoff Strople
Affiliation:
Department of Community Health and Epidemiology, Dalhousie University
Olga Kits
Affiliation:
Department of Community Health and Epidemiology, Dalhousie University
Steven Dukeshire
Affiliation:
Nova Scotia Agricultural College
Camille L. Angus
Affiliation:
Department of Community Health and Epidemiology, Dalhousie University
Karen Szala-Meneok
Affiliation:
School of Rehabilitation Science, McMaster University
Jennifer Uniat
Affiliation:
Division of Clinical Epidemiology, McGill University Health Centre
Homa Keshavarz
Affiliation:
McMaster Evidence-based Practice Center, McMaster University Department of Clinical Epidemiology and Biostatistics, McMaster University
Linda Furlini
Affiliation:
Research Ethics Office, McGill University
Amélie Pelletier
Affiliation:
Division of Clinical Epidemiology, McGill University Health Centre
*
†Correspondence should be sent to: / La correspondance doivent être adressées à : Susan Kirkland, PhD Departments of Community Health and Epidemiology and Medicine Dalhousie University 5790 University Ave Halifax, NS B3H 1V7 [email protected]
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Abstract

Successful recruitment and retention for population-based longitudinal studies requires understanding facilitators and barriers to participation. This study explored Canadians’ views regarding one such study, the proposed Canadian Longitudinal Study on Aging (CLSA). Focus groups of participants ≥40 years of age were held in six proposed CLSA data collection sites (Halifax, Montreal, Hamilton, Winnipeg, Calgary, and Vancouver) to discuss participating in a long-term study of healthy aging. There was fundamental support for longitudinal research on health and aging. Altruism was a key motivation to participation, and universities were viewed as credible parties to conduct such studies. Participants had few worries about providing biological samples but expressed concern about potential misuse of genetic materials, commercialization of participant data, and privacy issues. These findings have already informed current, and will inform future, work on the CLSA, and will also provide useful information to researchers who undertake other population-based longitudinal studies.

Résumé

Le recrutement et la rétention réussis lors d’études longitudinales basées sur la population exigent la compréhension des facilitants et des barrières à la participation. Les points de vue des Canadiens(nes) concernant une telle étude proposée, l’Étude longitudinale canadienne sur le vieillissement (ÉLCV), ont été explorés. Des groupes de discussion de participants âgés de ≥ 40 ans ont été mis en place dans six emplacements proposés pour la collecte de données de l’ÉLCV (Halifax, Montréal, Hamilton, Winnipeg, Calgary et Vancouver) pour discuter de la participation possible à une étude à long terme sur le vieillissement en santé. Il y avait un soutien marqué pour la recherche longitudinale sur la santé et le vieillissement. L’altruisme était une motivation clée à la participation et les universités ont été perçues comme des institutions crédibles pour entreprendre de telles études. Les participants ont eu peu d’inquiétude à l’égard du don d’échantillons biologiques, mais ont exprimé quelques inquiétudes concernant l’utilisation inapproprié du matériel génétique, la commercialisation des données de participant et les questions reliées à la confidentialité et la vie privée. Ces résultats ont déjà eu un impact sur le travail actuel, et futur, de l’ÉLCV, et fourniront également des informations utiles aux chercheurs qui entreprennent d’autres études longitudinales basées sur la population.

Keywords

Étude longitudinale canadienne sur le vieillissementELCVparticipants en recherchevieillissementrecrutement et rétentionaffaires privées et confidentiellesétude longitudinaleCanadian Longitudinal Study on AgingCLSAresearch participantsagingbeliefs and attitudesrecruitment and retentionprivacy and confidentialitylongitudinal study
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 28 , Issue 3: Special Issue on the Canadian Longitudinal Study on Aging (CLSA) , September 2009 , pp. 231 - 242
Copyright
Copyright © Canadian Association on Gerontology 2009

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Footnotes

*

Funding for the development of the Canadian Longitudinal Study on Aging was provided by the Canadian Institutes of Health Research and Le Fonds de la recherche en santé du Québec – Réseau québécois de recherche sur le vieillissement.

Parminder Raina holds a Canadian Institutes of Health Research Investigator award, an Ontario Premier’s Research Excellence award, and a Labarge Chair in Research and Knowledge Application for Optimal Aging.

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