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How to Establish and Follow up a Large Prospective Cohort Study in the 21st Century--Lessons from UK COSMOS.

Toledano MB, Smith RB, Brook JP, Douglass M, Elliott P - PLoS ONE (2015)

Bottom Line: Web-based e-consent and data collection should be considered in large scale observational studies, as they offer a streamlined experience which benefits both participants and researchers and save costs.Commercial providers of register and marketing data, smartphones, apps, email, social media, and the internet offer innovative possibilities for identifying, recruiting and following up cohorts.Thus a more streamlined experience to the benefit of both research participants and researchers becomes achievable.

View Article: PubMed Central - PubMed

Affiliation: MRC-PHE Centre for Environment and Health, Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, St Mary's Campus, London, United Kingdom.

ABSTRACT
Large-scale prospective cohort studies are invaluable in epidemiology, but they are increasingly difficult and costly to establish and follow-up. More efficient methods for recruitment, data collection and follow-up are essential if such studies are to remain feasible with limited public and research funds. Here, we discuss how these challenges were addressed in the UK COSMOS cohort study where fixed budget and limited time frame necessitated new approaches to consent and recruitment between 2009-2012. Web-based e-consent and data collection should be considered in large scale observational studies, as they offer a streamlined experience which benefits both participants and researchers and save costs. Commercial providers of register and marketing data, smartphones, apps, email, social media, and the internet offer innovative possibilities for identifying, recruiting and following up cohorts. Using examples from UK COSMOS, this article sets out the dos and don'ts for today's cohort studies and provides a guide on how best to take advantage of new technologies and innovative methods to simplify logistics and minimise costs. Thus a more streamlined experience to the benefit of both research participants and researchers becomes achievable.

No MeSH data available.


Cumulative response rates to UK COSMOS study invitations, by recruitment phase, 2009–2012.Fig 1 Footnotes: Phase 1 used a mobile phone subscriber sampling frame, letter invitation, paper consent and registration, questionnaire via paper or web and no incentive. Phase 2 used a mobile phone subscriber sampling frame, letter invitation, web-based consent, registration, and questionnaire and a prize draw incentive. Phase 3 used a direct marketing list sampling frame, SMS invitation, web-based consent, registration, and questionnaire and no incentive. Phase 5 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a prize draw incentive. Phase 6 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a gift voucher incentive. Phase 7 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a gift voucher incentive. ‘Invitation only’ represents recruitment of invitee named on letter, and ‘Spin-off recruitment’ represents recruitment of additional friends and family.
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pone.0131521.g001: Cumulative response rates to UK COSMOS study invitations, by recruitment phase, 2009–2012.Fig 1 Footnotes: Phase 1 used a mobile phone subscriber sampling frame, letter invitation, paper consent and registration, questionnaire via paper or web and no incentive. Phase 2 used a mobile phone subscriber sampling frame, letter invitation, web-based consent, registration, and questionnaire and a prize draw incentive. Phase 3 used a direct marketing list sampling frame, SMS invitation, web-based consent, registration, and questionnaire and no incentive. Phase 5 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a prize draw incentive. Phase 6 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a gift voucher incentive. Phase 7 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a gift voucher incentive. ‘Invitation only’ represents recruitment of invitee named on letter, and ‘Spin-off recruitment’ represents recruitment of additional friends and family.

Mentions: In our first large-scale recruitment campaign using the fully web-based system (Phase 2), we invited ~2.4 million people and achieved rapid recruitment (~60,000 participants in 7 weeks) and a response rate of 2.8%. Comparing Phases 1 and 2 (Table 1) there was a clear penalty of using a web-only process in terms of decreased response rate—probably reflecting lost ‘paper responders’. However, cost-efficiency was vastly improved in Phase 2, with cost per participant recruited being ~16% of that in Phase 1. Using a web-based system speeded up recruitment and improved efficiency. Peak recruitment and baseline data collection was achieved very quickly, within 30–60 days (Fig 1). Acceptability and accessibility of new methods to participants is critical to success. We experienced very few adverse reactions (N = 15 irate people, i.e. <0.01%) during Phase 2, and these related to how individuals had been identified for mailing not the use of web-based methods. In Phase 2, our first large-scale recruitment campaign, 7890 calls were received by the call centre in the first 8 weeks of recruitment, averaging 164 calls per day, with a peak of 695 calls in a single day.


How to Establish and Follow up a Large Prospective Cohort Study in the 21st Century--Lessons from UK COSMOS.

Toledano MB, Smith RB, Brook JP, Douglass M, Elliott P - PLoS ONE (2015)

Cumulative response rates to UK COSMOS study invitations, by recruitment phase, 2009–2012.Fig 1 Footnotes: Phase 1 used a mobile phone subscriber sampling frame, letter invitation, paper consent and registration, questionnaire via paper or web and no incentive. Phase 2 used a mobile phone subscriber sampling frame, letter invitation, web-based consent, registration, and questionnaire and a prize draw incentive. Phase 3 used a direct marketing list sampling frame, SMS invitation, web-based consent, registration, and questionnaire and no incentive. Phase 5 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a prize draw incentive. Phase 6 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a gift voucher incentive. Phase 7 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a gift voucher incentive. ‘Invitation only’ represents recruitment of invitee named on letter, and ‘Spin-off recruitment’ represents recruitment of additional friends and family.
© Copyright Policy
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4492973&req=5

pone.0131521.g001: Cumulative response rates to UK COSMOS study invitations, by recruitment phase, 2009–2012.Fig 1 Footnotes: Phase 1 used a mobile phone subscriber sampling frame, letter invitation, paper consent and registration, questionnaire via paper or web and no incentive. Phase 2 used a mobile phone subscriber sampling frame, letter invitation, web-based consent, registration, and questionnaire and a prize draw incentive. Phase 3 used a direct marketing list sampling frame, SMS invitation, web-based consent, registration, and questionnaire and no incentive. Phase 5 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a prize draw incentive. Phase 6 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a gift voucher incentive. Phase 7 used an electoral register sampling frame, letter invitation, web-based consent, registration, and questionnaire and a gift voucher incentive. ‘Invitation only’ represents recruitment of invitee named on letter, and ‘Spin-off recruitment’ represents recruitment of additional friends and family.
Mentions: In our first large-scale recruitment campaign using the fully web-based system (Phase 2), we invited ~2.4 million people and achieved rapid recruitment (~60,000 participants in 7 weeks) and a response rate of 2.8%. Comparing Phases 1 and 2 (Table 1) there was a clear penalty of using a web-only process in terms of decreased response rate—probably reflecting lost ‘paper responders’. However, cost-efficiency was vastly improved in Phase 2, with cost per participant recruited being ~16% of that in Phase 1. Using a web-based system speeded up recruitment and improved efficiency. Peak recruitment and baseline data collection was achieved very quickly, within 30–60 days (Fig 1). Acceptability and accessibility of new methods to participants is critical to success. We experienced very few adverse reactions (N = 15 irate people, i.e. <0.01%) during Phase 2, and these related to how individuals had been identified for mailing not the use of web-based methods. In Phase 2, our first large-scale recruitment campaign, 7890 calls were received by the call centre in the first 8 weeks of recruitment, averaging 164 calls per day, with a peak of 695 calls in a single day.

Bottom Line: Web-based e-consent and data collection should be considered in large scale observational studies, as they offer a streamlined experience which benefits both participants and researchers and save costs.Commercial providers of register and marketing data, smartphones, apps, email, social media, and the internet offer innovative possibilities for identifying, recruiting and following up cohorts.Thus a more streamlined experience to the benefit of both research participants and researchers becomes achievable.

View Article: PubMed Central - PubMed

Affiliation: MRC-PHE Centre for Environment and Health, Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, St Mary's Campus, London, United Kingdom.

ABSTRACT
Large-scale prospective cohort studies are invaluable in epidemiology, but they are increasingly difficult and costly to establish and follow-up. More efficient methods for recruitment, data collection and follow-up are essential if such studies are to remain feasible with limited public and research funds. Here, we discuss how these challenges were addressed in the UK COSMOS cohort study where fixed budget and limited time frame necessitated new approaches to consent and recruitment between 2009-2012. Web-based e-consent and data collection should be considered in large scale observational studies, as they offer a streamlined experience which benefits both participants and researchers and save costs. Commercial providers of register and marketing data, smartphones, apps, email, social media, and the internet offer innovative possibilities for identifying, recruiting and following up cohorts. Using examples from UK COSMOS, this article sets out the dos and don'ts for today's cohort studies and provides a guide on how best to take advantage of new technologies and innovative methods to simplify logistics and minimise costs. Thus a more streamlined experience to the benefit of both research participants and researchers becomes achievable.

No MeSH data available.