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Epidemiology:
doi: 10.1097/EDE.0b013e3182087666
Letters

Increasing Study Participation

Boyle, Terry; Landrigan, Jenny; Bulsara, Caroline; Fritschi, Lin; Heyworth, Jane

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School of Population Health, The University of Western Australia, Nedlands, Australia; Western Australian Institute for Medical Research, The University of Western Australia, Nedlands, Australia tboyle@waimr.uwa.edu.au (Boyle)

School of Population Health, The University of Western Australia, Nedlands, Australia (Landrigan, Heyworth)

School of Primary, Aboriginal and Rural Health Care, The University of Western Australia, Nedlands, Australia (Bulsara)

Western Australian Institute for Medical Research, The University of Western Australia, Nedlands, Australia (Fritschi)

Supported by the Australian National Health and Medical Research Council (Grant Number 353568) and an NHMRC Fellowship (to L.F.).

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To the Editor:

Factors such as age, sex, race, socioeconomic status, and education are associated with participation in epidemiologic studies, but there is limited literature concerning reasons for participation or nonparticipation. The literature has tended to focus on determinants of participation rates in clinical trials and physician surveys, rather than in population-based epidemiologic studies.1 We conducted a series of focus groups to examine the reasons behind participants' decision to take part (or not take part) in a population-based case-control study of colorectal cancer (the Western Australian Bowel Health Study). We also asked what they believed would encourage people to take part in research.

Four focus groups were conducted: consenting cases (n = 11); consenting controls (n = 12); nonresponding controls (ie, controls who did not respond to the invitation letter, n = 7); and nonconsenting controls (ie, controls who did not consent to participate in the case-control study, n = 5). The focus-group participants were between 40 and 80 years of age. Participation in the case-control study required completing 2 self-administered questionnaires and voluntarily supplying a DNA sample. Approval for the focus-group study was obtained from The University of Western Australia Human Research Ethics Committee and the Confidentiality of Health Information Committee of the Western Australian Department of Health. Written informed consent was obtained from all participants.

The majority of people in the focus groups of consenting participants cited altruistic reasons, such as civic duty and a desire to benefit the future health of family members, friends, and the wider community, as the main reason for taking part in the case-control study. Cases, in particular, were strongly motivated by altruism. Altruism has been commonly reported as a motive for participation in population-based2 and clinical research.3–5 Focus-group participants also identified the promise of a summary of the research findings and the provision of a reply paid envelope as good incentives to participate.

In the focus group of nonresponders, lack of relevance was the main reason given for not participating in the case-control study. Most of the focus group of nonresponders had not consciously decided to decline participation, but rather had not particularly taken notice of the invitation. A personal appeal to altruism may be an effective method to increase participation among participants for whom the study topic is not relevant.2 Three of the 5 participants in the nonconsenting group expressed concerns about the privacy and retention of the DNA sample, suggesting that this may also have had an effect on their decision to not participate.

The focus group participants suggested several methods to increase participation in research:

* Researchers need to approach potential participants with a more positive message about the disease being studied and the research study, rather than worrying messages about the number of deaths being caused by the disease;

* The initial invitation should be concise and have a message that captures the reader's imagination; and

* A journalist or professional writer, rather than the researchers, should design the letter and information sheets.

Participants also noted that they had greatly valued personalized initial contact in a study, and suggested that immediate follow-up is best done by phone as soon as possible. There was a consensus that public education and raising awareness of health research (an idea that has been raised previously6) would also be beneficial in encouraging participation in population-based studies.

Terry Boyle

School of Population Health

The University of Western Australia

Nedlands, Australia

Western Australian Institute for Medical Research

The University of Western Australia

Nedlands, Australia

tboyle@waimr.uwa.edu.au

Jenny Landrigan

School of Population Health

The University of Western Australia

Nedlands, Australia

Caroline Bulsara

School of Primary, Aboriginal and Rural Health Care

The University of Western Australia

Nedlands, Australia

Lin Fritschi

Western Australian Institute for Medical Research

The University of Western Australia

Nedlands, Australia

Jane Heyworth

School of Population Health

The University of Western Australia

Nedlands, Australia

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REFERENCES

1.Fry CL. A comprehensive evidence-based approach is needed for promoting participation in health research: a commentary on Williams [Commentary]. Soc Sci Med. 2008;66:1457–1460.

2.Sinicrope PS, Patten CA, Bonnema SM, et al. Healthy women's motivators and barriers to participation in a breast cancer cohort study: a qualitative study. Ann Epidemiol. 2009;19:484–493.

3.Hayman RM, Taylor BJ, Peart NS, Galland BC, Sayers RM. Participation in research: informed consent, motivation and influence. J Paediatr Child Health. 2001;37:51–54.

4.Nakash RA, Hutton JL, Lamb SE, Gates S, Fisher J. Response and non-response to postal questionnaire follow-up in a clinical trial—a qualitative study of the patient's perspective. J Eval Clin Pract. 2008;14:226–235.

5.Sharp L, Cotton SC, Alexander L, et al. Reasons for participation and non-participation in a randomized controlled trial: postal questionnaire surveys of women eligible for TOMBOLA (Trial Of Management of Borderline and Other Low-grade Abnormal smears). Clin Trials. 2006;3:431–442.

6.Williams B, Entwistle V, Haddow G, et al. Promoting research participation: why not advertise altruism? Soc Sci Med. 2008;66:1451–1456.

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© 2011 Lippincott Williams & Wilkins, Inc.

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