Why Do People Participate in Epidemiological ... - Springer Link

Bioethical Inquiry (2015) 12:227–237 DOI 10.1007/s11673-015-9611-2

ORIGINAL RESEARCH

Why Do People Participate in Epidemiological Research? Claudia Slegers & Deborah Zion & Deborah Glass & Helen Kelsall & Lin Fritschi & Ngiare Brown & Bebe Loff

Received: 11 December 2013 / Accepted: 23 July 2014 / Published online: 12 February 2015 # Journal of Bioethical Inquiry Pty Ltd. 2015

Abstract Many assumptions are made about public willingness to participate in epidemiological research, yet few empirical studies have been conducted to ascertain whether such assumptions are correct. Our qualitative study of the public and of expert stakeholders leads us to suggest that people are generally prepared to participate in epidemiological research, particularly if it is conducted by a trusted public institution such as a government health department, charity, or university. However, there is widespread community distrust of research conducted or sponsored by pharmaceutical companies. Individuals are prompted to take part if the study concerns an illness they or a family member

or friend have personally experienced or if they believe the research will confer a widespread public benefit. Preferences vary about the mode of contact for the research to be conducted. Willingness to participate in telephone surveys has decreased in recent years, and this may be a consequence of an increase in calls to homes by telemarketers and market researchers. Participants also stressed the importance of knowing where their names and contact details were sourced and suggested that this information be available to prospective study participants as a matter of course in the first approach or letter. We provide valuable information to epidemiologists in designing studies.

C. Slegers (*) : D. Zion : D. Glass : H. Kelsall : B. Loff Department of Epidemiology and Preventive Medicine, Monash University, The Alfred Centre, Commercial Road, Melbourne, Victoria 3004, Australia e-mail: [email protected]

L. Fritschi School of Public Health, Faculty of Health Sciences, Bentley Campus, Curtin University, Perth, Western Australia 6102, Australia

C. Slegers RDNS Institute, Royal District Nursing Service, 31 Alma Road, St. Kilda, Victoria 3182, Australia D. Zion The Centre for Cultural Diversity & Wellbeing, Footscray Nicholson Campus, Victoria University, P.O. Box 14428, Melbourne, Victoria 8001, Australia L. Fritschi Western Australian Institute of Medical Research, The University of Western Australia, Nedlands Campus, Western Australia 6009, Australia

N. Brown Poche Centre for Indigenous Health, Sydney School of Public Health, University of Sydney, Sydney, New South Wales 2006, Australia

N. Brown Graduate School of Medicine, Building 28, University of Wollongong, Northfields Avenue, Wollongong, New South Wales 2522, Australia

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Keywords Research subjects/psychology . Public opinion . Patient participation . Epidemiologic research design . Motivation . Informed consent

Participation rates in epidemiological research in industrialised countries have fallen sharply over recent years (Morton, Cahill, and Hartge 2006). The reasons for this are unclear. Given the significant implications of diminished participation for the quality of epidemiological research, we set out to explore why this is the case. There is considerable literature on how participation is influenced by the demographic characteristics of study participants, such as age, gender, ethnicity, and socioeconomic status (Dunn et al. 2004; Eagan et al. 2002; Galea and Tracey 2007; Plummer et al. 2002; Vinther-Larsen et al. 2010), as well as literature on participation among particular community groups (Holmes et al. 2002; Hull et al. 2004; McSweeney et al. 2009). Other research has examined the practice of reporting participation in different kinds of epidemiological studies, such as case-control or cohort studies (Morton, Cahill, and Hartge 2006), or participation in health services research or in clinical studies (Abma 2005; Breitkopf et al. 2011; Buchwald et al. 2006; Cook and Nunkoosing 2008; Hunter et al. 2012; Morris and Schneider 2010; Peel et al. 2006; Willis et al. 2011). However, less attention has been given to understanding what influences the decision to participate in epidemiological research (Galea and Tracey 2007; Kirkland et al. 2009; Teschke et al. 2010), which typically involves use of government or hospital-held data sets or participant responses to a health survey. Our aim in this qualitative study was to ascertain the views of members of the general public and expert stakeholders about factors shaping participation in epidemiological research. Although U.S. universities and companies have developed advanced practices for attracting participants, such as databases of people willing to take part (University of Pittsburgh 2011; Washington University School of Medicine 2008), this has not uniformly been the case in Australia or elsewhere; in any case, these practices introduce problems of their own, such as the risk of selfselection bias.

Bioethical Inquiry (2015) 12:227–237

Methods: Qualitative Research and Ethical Investigation We chose qualitative research methods to obtain rich, contextualised evidence about the complex range of motivations underpinning the decision to participate in epidemiological research. This research explores practical issues, such as preferences in how potential participants might be contacted by researchers, and ethical issues raised by participant responses. This qualitative research counters the criticism that is sometimes levelled at research that addresses ethical questions— namely, that it imposes ethical analysis on existing datasets rather than discovering the ethical issues of importance to participants and the populations being studied. The issues we identify are drawn from the data we have collected through a process of analysis informed by grounded theory, as will be discussed below. Sample, Data Collection, and Recruitment Ethics committee approval was obtained from the Monash University Human Research Ethics Committee as the primary approving ethics committee and from three further ethics committees (Aboriginal Health and Medical Research Council of New South Wales Ethics Committee, the Central Australian Human Research Ethics Committee, and the Human Research Ethics Committee of the Northern Territory Department of Health and Menzies School of Health Research). We conducted four focus groups with members of the general public. We chose focus groups rather than individual interviews because group interaction could allow participants who might be intimidated by a one-to-one situation to explore and clarify a new topic through discussion (Robling et al. 2004); focus groups also allowed us access to a larger pool of the general public within a limited period of data collection than individual interviews. We also conducted in-depth, semi-structured interviews with Australians of diverse cultural and linguistic backgrounds (n = 5 people). Individual interviews were chosen because we considered that this target group, many of whom are migrants, might have had a less positive interaction with the health system and the state and can be less likely to engage in health research; we therefore thought that they may be more open in an individual interview. We conducted focus groups with members of the public of Aboriginal and Torres Strait Islander (ATSI) background (n = 2 focus groups). Focus groups were


chosen for the same reasons as those described for the general public and because investigator and indigenous clinician NB advised that this target group tend to be more comfortable in a collective environment. We found that ATSI views concerning participation in epidemiological research differ to such an extent that they warrant reporting in a separate article. Finally, we conducted in-depth, semi-structured interviews with expert stakeholders, namely epidemiologists and epidemiological researchers, human research ethics committee (HREC) members (including members of ATSI HRECs), medical lawyers, and those with a special interest in privacy (n = 20 people). The views of epidemiologists and epidemiological researchers are particularly useful in this paper because they typically have extensive experience in recruiting participants for their studies and insights on what measures are most effective in that endeavour. We chose individual interviews with these professionals in their own settings, so that they were speaking from their role as a stakeholder rather than from a personal point of view and because we considered it unfeasible to conduct focus groups with these professionals located in numerous different organisations across Australia. We recruited members of the general public by placing public notices in locations such as child-care, community, and recreational centres and through Bsnowballing^ from our personal networks. We recruited Australians of diverse cultural background and ATSI Australians through Bsnowballing^ from our personal networks. Those who were interested in participating made contact with the research team. Expert stakeholders across Australia were recruited by contacting those known to have active interests in health, privacy, and research from our diverse professional and personal networks (study investigators include epidemiologists, a health lawyer, an ethicist, and one of Australia’s first Aboriginal clinicians). We posted or e-mailed an explanatory statement describing the research project and focus group/interview process and a consent form to each prospective participant who made contact with the research team. Participants were asked to sign the consent form and return it to us or bring it on the day of the interview. We also presented information verbally describing the study’s purpose and participation process at the commencement of each focus group/interview. We protected the privacy of participants through the safe storage and de-identification of all data. During interviews and focus groups with all except the expert stakeholders, the qualitative researchers CS,

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DZ, NB, and BL began by asking participants what they thought epidemiological research involved and, if they did not know, explained that it is investigating the occurrence or causes of a disease in a population, typically through responses to a survey or use of routinely collected health records. We then asked participants a series of open-ended questions such as: BHave you/has anyone ever been invited to take part in health research previously? Can you please tell me/us about this experience? What prompted your decision to participate/not to participate?^ Those who had not been approached for health research often proved keen to share other experiences of having been approached, for example by telemarketers and how this had shaped their attitudes in general. With interviews of expert stakeholders, the above questions were replaced with initial questions asking about their role; questions asking their views about public motivations for participation were scheduled later in the interview schedule. Interviews and focus groups were generally of 60−90 minutes duration.

Data Analysis All audio recordings of the interviews and focus groups were transcribed verbatim, yielding several hundred pages of qualitative data. In qualitative research, the processes of analysing qualitative data and rendering rigorous, authentic evidence are seldom made transparent (Green et al. 2007). In what follows, therefore, we will describe these processes in some detail. This explication also helps provide readers with an Baudit trail^ in order to trace researcher judgement and determine whether the study’s findings may be relied upon as a platform for further study (Lincoln and Guba 1985). To begin, we read through each transcript and performed open coding (i.e., coding the interview data by dividing it into smaller segments and assigning a descriptor, or code name, for each segment), including some a priori categories we had anticipated from our research questions and literature as well as other broad categories, such as Bregistry,^ Bconsent,^ and Bmeaning of privacy.^ At the same time, we uploaded the transcribed data into NVivo, a computer program that helps manage rich, textual data (Johnston 2006). As data collection, coding, and analysis proceeded, we identified more fine-grained codes and categories, such as “identification,” “trust,” and “vulnerable populations.” These codes emerged from a combination of the following sources:

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Immersion in the ways in which participants spoke of various issues; Reading the relevant literature; and Regular researcher meetings to discuss and to compare categories and their relationships.

During research meetings, we decided which codes meant similar or different concepts in order to proceed with an agreed set of categories (Green et al. 2007). As a more comprehensive system of codes emerged, we made notes at each category, flagging what idea or quote had inspired each category and, where relevant, the links and overlaps among categories. As we continued to gain a better grasp of the categories and themes that were emerging through data collection and analysis, we coded each new transcript and conducted further interviews and focus groups, until no new categories emerged. We started to write about emerging themes and were able to verify, to qualify, and/or to counter some of the emerging themes and ideas that had arisen earlier. We continued collecting data until theoretical saturation was reached—that is, no new insights were being discovered from the data. Grounded theory informed our approach to data collection and analysis (Strauss and Corbin 1998) in that our approach was inductive (the theories and themes being grounded in the data) and iterative. In the quotations below, each expert stakeholder has been given a first name pseudonym, as have interviewees of diverse ethnic backgrounds; focus groups have each been assigned a letter from A to D, and each focus group member has been assigned a first name pseudonym. We have identified the role of expert stakeholders, for example if they are a researcher or an ethics committee member or a medical lawyer, to help provide context. Many expert stakeholders have more than one role. We have edited some quotes to remove information that might identify individuals and/or institutions.

Results The findings we report in this paper are based on qualitative data collection with the following groups. The four focus groups with members of the general public were each composed of four to eight participants. Focus groups A, B, and C were conducted in Australian state capital cities; focus group D was conducted in a rural town. The in-depth, semi-structured interviews with Australians of diverse cultural and linguistic backgrounds

included first- and second-generation migrants from China, India, Italy, Serbia, and Greece (n = 5 people). The indepth, semi- structured interviews with expert stakeholders included epidemiologists and epidemiological researchers, HREC members, medical lawyers, and those with a special interest in privacy (n = 20 people). Members of the general public, including people from diverse cultural and linguistic backgrounds, expressed a general willingness to take part in epidemiological research and articulated clearly the kinds of research in which they were more willing to participate and those in which they would not. In the following sections, we discuss the various motivations that shape decisions about whether or not to participate in epidemiological research. We focus mainly on the views and experiences of members of the public, including those from diverse cultural and linguistic backgrounds. At times, however, we also draw on the perspectives of expert stakeholders in their roles as researchers, ethics committee members, and/or lawyers; in some instances, the stakeholder views expand or give depth to themes raised by members of the general public, and in other instances, they provide important qualifiers to themes raised by the general public. Trust In her introduction to the 2002 Reith Lectures, Onora O’Neill quotes Confucius’ description of the three things required for government: weapons, food, and trust. Confucius advises that if a ruler must surrender any of these, it should first be weapons, then food, noting Bwithout trust, we cannot stand^ (O’Neill 2002). O’Neill explains simply that we need trust Bbecause we have to be able to rely on others acting as they say they will^ and they must be able to rely on us (2002, lecture 1, ¶2). Of course, it need not be the case that what is required is an uncritical trust, but perhaps a more qualified judgment or hope that certain institutions— public institutions—are more likely to behave as they say they will and are more likely to act in ways that promote the public good. Whether what encourages public participation in research is a stronger or weaker version of trust, if neither is present participants will be difficult to recruit. It is known that it is hard to recruit African Americans into research. The reasons for this have been reasonably easy to identify. Among them are the historical alienation of African Americans from government, their enslavement and


involuntary use for research purposes (including dissections), the comparative contemporary lack of African American researchers, and, in particular, the continued impact of the notorious Tuskegee Syphilis Study. This was a study conducted by the United States Public Health Service that took place in Alabama between 1932 and 1972. Relying on deceptive means, the study recruited 399 African American men infected with syphilis as subjects and 201 African American men as controls. Participants were not told they had syphilis, and when penicillin became available, they were intentionally denied it so the study might continue, with catastrophic consequences not only to many of the participants but also to their families (Freimuth et al. 2001). Our findings confirm how critical trust is to the conduct of research and how necessary it is that research institutions do not act in ways that betray trust. Indeed, what this discussion suggests is that it is not respect for autonomy and its enactment as the practice of obtaining informed consent or refusal that should be regarded as the cornerstone of contemporary research ethics. Rather, it is the trust that the public retains in its institutions and the people who work in them that enables research to proceed with what is frequently less than full understanding on the part of participants. Participants expressed a preference for taking part in research conducted by a trusted public institution, such as a government health department, hospital, charity, or university. The following response was typical: If you had someone from the department of vet science saying they were trying to do this research on cancer [of] vets, that’s obviously gonna have an impact, because there’s an affiliation there … as opposed to a total stranger saying I want to do research. It’s the kind of approach the government has used too when it comes to census time, saying, BYou’re going to get representatives coming from government who are ID’d,^ so you know it’s coming from the right people, that the right people are going to get the information. There’s a strong trust, yeah trust is the right word, anything that’s affiliated (Vince, interviewee of Italian background). Similarly, the following interaction is from focus group A with members of the public: Madeline: If it was from a reputable place, like yourselves, that makes a huge difference. If it’s

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somebody doing it for some money spinning thing, I’m not interested. Hazel: Yeah, I’m pretty much in the same boat as Madeline. Pamela: Yes, I have to know for sure it’s genuine. Sophie: I’m on the Do Not Call Register [a secure list run by the Australian Communications and Media Authority where householders can register their phone numbers to avoid receiving unsolicited telemarketing calls], to make sure that I don’t get sales … pretend they’re research and really they’re a sales thing. Recognisable institutional logos and letterheads on approach letters were said to help to distinguish a public research institution from one that is private—private, for-profit institutions being widely understood as having a primary financial duty to shareholders with which an obligation to fulfil less self-interested and non-legally binding duties might conflict. Although the majority suggested they would respond more favourably to public institutions, such as government health departments and universities, this response was not uniform. An epidemiologist and registry custodian commented that universities were not always viewed favourably: And although I’ve got no data to support this, but I suspect [this charity] gets a good return because it’s got a good profile and it’s seen to be independent and helping people as well. And some universities, people get pissed off with universities for certain things, especially when they waste millions or whatever, student riots, or they spend it all on sociology instead of … I don’t know, it’s hard (James, epidemiologist and registry custodian). There is widespread public distrust of research sponsored or conducted by private companies. Pharmaceutical companies, in particular, were repeatedly singled out by participants, almost without exception on the basis that a drug company’s over-riding motivation was to make a profit. The integrity of pharmaceutical company research was questioned, with interviewees highlighting that companies routinely withhold from public scrutiny results that show product inefficacy or adverse side

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effects. The following exchange from focus group A is characteristic of the perceptions of pharmaceutical companies. Whereas this focus group appears to be speaking of clinical drug trials, their attitudes towards epidemiological and other public health research have evidently been negatively impacted by the conduct of pharmaceutical companies in clinical trials. Madeline: My understanding is it’s mostly the drug companies that fund research, and I find it extremely disturbing myself, because obviously they’re going to want to justify their product. So if I felt I was actually being part of research from my hospital, or from the government, that would make me feel a lot better than somebody trying to prove their product, whatever they put together. Sophie: I would like to see the results where the drugs don’t work, and they don’t do that. … They do not release the results that they don’t want us to see. Pamela: A friend of mine, her husband has [mental illness]. And they know that he’s still having this drug, and they know that his kidneys are just being broken down, it’s got a side effect. Now how many other people are going to be—wouldn’t you think that they’d try and research and find an alternative? It makes you wonder, because it all comes back to money, I’m sure, these drug companies, money. Participants were clear that the source of funding and therefore the outcomes and accessibility of research as a public good were significant to them. Re-emphasising the centrality of trust in the research context, these considerations were of greater importance than issues related to the protection of autonomy and preservation of privacy. The consequence of the absence of trust may be seen in our interview with two individuals who work with people with mental illness, including some asked to take part in research. They conveyed a distrust of research sponsored by pharmaceutical companies. Significantly, they also expressed their suspicion of government-sponsored research because of concerns that information they provided might be used to assist in justifying their involuntary detention. During periods of psychosis, some individuals might also hold conspiracy theories about governments. They commented about sponsorship of health research:


Gail: With some of our clients, I think if it’s being conducted by the government [that] would be an issue, because they have conspiracy theories. So probably the most friendly form of research people could imagine would be from the university. Fran: Apart from conspiracy theories, a lot of clients might be quite correctly worried that, to do with mental illness, issues they talk about might later be used to assist in involuntary detention. And I think if it was private research for a pharmaceutical company, I think a lot of our clients would be very suspicious of that. Gail: Because [the people collecting data are] private citizens who’d be looking at their file? And [there’s] the idea that they would just run off with it and not be regulated. But of course they are regulated. Some pointed out that if an individual had experienced unsatisfactory or poor health care, they were much less likely to take part in any kind of health research. We raised this with a person who deals with complaints about health care, who responded: That would be our experience … entirely, that if people have had a poor experience then they lose trust and that makes them very suspicious and they remember it for years and years and years, and whenever I go to [a private event] I have a queue of people wanting to tell me about something horrible that happened 10 years ago and that they are still resentful of. These comments are reminiscent of the guarded response to participation in research by the African American community noted earlier. Personal Experience of the Disease Under Study Members of the public indicated that they would be motivated to take part in epidemiological research if they or a close family member or friend had been affected by the illness or disability being investigated. Focus group members conveyed stories of their own or a relative’s participation in research about a disease experienced by a family member. For example, a senior citizen from focus group C recalled:


My daughter [took part] through a series of age groups, and she now goes every five years as [part of] a continuing survey. … [She participated] because I’m diabetic and she wanted to know more about [diabetes], and she thought the research could be useful (Nancy, focus group C). Reflecting on her experience as an ethics committee member, researcher, and relative of participants, Ingrid believed that older people participate in greater numbers because they are more likely to have been affected by disease, either personally or through loved ones. She also suggested that older people are more likely to have benefited from health research and tend to have more time to take part: They know of someone who’s had a similar disease and that they want to support that. Cancer research, I think people would be wanting to [take part], because everyone knows [or] has been touched by it in a negative way. … And maybe … as they’re getting older, they realise they rely on more too. That they’ve probably benefited from research with medication they’ve taken, treatment they’ve been exposed to. Well I know with my parents, my father spent a lot of time in hospitals with cancer treatments over the years so he’s met lots of young people with cancer, so he would … always give his time for research because that really affects him (Ingrid, ethics committee member and researcher). Here, Ingrid touches upon the two major ethical issues referred to by Schaefer, Emanuel, and Wertheimer (2009), namely the duty of beneficence and the obligation to participate if one is likely to receive a benefit. Ingrid’s views were supported by other participants (described below). Her comment is also relevant if we consider the importance of a Bpublic good^; that is, a good that is held in common and which individuals can both contribute to and draw from when required. In the next section, our participants comment on why trust is an important foundation to this concept. Altruism, Purpose, and Public Benefit Although there has been little public discussion about what constitutes a community in relation to health research as a public good, the concept of community benefit clearly motivated participants. Altruism and the purpose(s) of the study were also motivating factors.

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Chinese Australian Cheung explained, BIf it’s for the good of our community, that’s fine with me.^ Some described a sense of urgency in helping find an answer for an outbreak of disease. Paul, an infectious diseases epidemiologist, described it thus: Where I work in disease outbreak investigation, people have got a high rate of participation because they want to help find out the answer. They want to know what food is that, making all these kids sick. … So if they perceive there is a real, imminent danger, that’s also influential. Research into cancer, diabetes, and heart disease were typical examples of diseases nominated by participants as deserving of support. Research on illnesses affecting children is also likely to attract participation. Other diseases in this category affect people in developing countries. Indian Australian Srikant commented: Only what matters is the outcome. … What immediately comes to mind is something to improve the health of the community … because there are so many epidemics. … There are so many people dying out there, Africa, South America, Asia … I’m really passionate about things like poverty because I’ve seen poverty closely, coming from India.

A Sense of Obligation Consistent with the Bfree rider^ ethical argument— namely that it is wrong to benefit from the acts of others if one is unwilling to contribute—interviewees described a sense of obligation about making their routinely collected data available to research if they had used government health services. For example, Mike from focus group D with the general public remarked: You could say the correct ethical position surely should be that if you have a medical condition then you accept as part of the cost of your treatment that you would be happy to provide the results or be put on a registry for the purposes of advancing medical knowledge and you consent, it ought to be part of the bargain in the knowledge that the information won’t be made available to door-to-door salesmen or marketing.

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An epidemiologist from a government health department expressed this argument as a reason why consent should not always be sought: Well I deal in a lot of studies where consent isn’t sought, and I personally think that where people have used government services, maybe they have an obligation to society, they may not recognise it, but their data should be available for understanding the impact of various factors on health … just like we have, as government officials and researchers, an obligation to the individual, they have an obligation to society as well (Paul, epidemiologist).

Source of Contact Details Participants across all backgrounds considered it important to know how researchers obtained their contact details and stated that this information should be available to all prospective study participants as a matter of course in the first approach or letter. Alice, from focus group B, had been approached about research related to her child who has a disability: Sometimes, I must admit, I’ve been asked to participate in research, students of university particularly, to do with autism, and I wonder where they’ve got my name, for example they got the name from [disability charity]? Or who’s given them the list? … I don’t suppose I’m that happy with it if they’ve got the name from some list if it’s a membership list or something, which is an organisation that you’re actually trying to support the work they do by being a member of that organisation (Alice, focus group B). Participants tended to favour public sources of contact information, such as telephone directories, over sources considered more private, such as membership lists for advocacy organisations, charities, or customer lists.


interviews if the participants’ spoken English is better than their written English. Where these needs were not considered, researchers risked being seen as excluding such people. Greek-born Maria worked for many years as an interpreter of Greek and Italian in the health system and had witnessed the systematic exclusion of patients of non-English speaking backgrounds: They will not pay any extra for interpreters to come along, so when they have research done, and not just my hospital because I have discussed it with other interpreters, [people] from ethnic speaking background mostly were excluded from the research. And I did find this extremely appalling. Those participants for whom English is a second language might prefer to take part via a telephone interview because they are still learning to write English. Tatjana, from Serbia, remarked, BI would be better dealing with talking with the person in phone calls than by writing, I’m a very bad speller, but yeah, why not?^ Some English-speaking participants emphasised the importance of working with interviewers whose English is locally accented. Participants mentioned how important it was to be able to understand the interviewer: If they’ve got an Australian person ringing an Australian person, they’re more likely to get results than if they get someone with an accent—not that—they can’t help it if they’ve got the accent, I know, but some I just cannot understand, and if you’re talking anything about your own health—dialect, they can’t get it. And anything about your health, it makes me very uneasy. Even if I go to a specialist who I really can’t—they’re probably brilliant specialists, but if I can’t really pick all the words, I get really anxious about that … because you need to know every single word about your health, don’t you? (Nancy, focus group C).

Time Commitment and Level of Response Burden Language Participants emphasised the need to consider non-native English speakers by providing interpreters, questionnaires in their native language, or conducting telephone

Perhaps unsurprisingly, many participants preferred noninvasive research taking little time. Cheung, a professional, remarked that he would be unable to take part in research taking longer than one hour. However, a registry


custodian and researcher, Loretta, commented that epidemiological research had become more timeconsuming: I think research now, because it’s so collaborative, it does involve a lot more sample collection, for example. It involves the participant doing more, not so much in qualitative research, you do an interview and it’s over. But in other epidemiological studies, you know, there are several questionnaires, you need a blood sample, you might need a urine sample, and then they’ll need to be approached again in a few weeks’ time. So that can be quite intensive. Other Themes Expert stakeholders who were both researchers and HREC members often pointed out that researchers do not clearly communicate the purpose and potential benefit of research projects. Overly lengthy and jargonfilled study information brochures were identified as a problem. Reflecting as both a researcher and ethics committee member, Ingrid explained: One of the difficulties we find with research now … is the explanatory statements. They’re so extensive. And people are too unwell to read them. When people are sick, people don’t want to read. They say they can’t even read a page in a magazine. And they’re really, really extensive. They’re often in language that’s exhausting for the average everyday person [so] people get put off. … They can actually put people off because we highlight the potential one negative thing. These comments were also supported by recollections of members of the public who had been seriously ill as well as those advocating for people with a mental illness who had been asked to read lengthy, confusing study information brochures. So concerned were the mental health advocates about this issue that they voluntarily brought along to our interview, on their own initiative, examples of information brochures they had been asked to read with their clients. After the interview, they pointed out statements that contradicted one another, which had confused both themselves and their clients. Monetary incentives, consumer vouchers, or free services were also cited as important in attracting people

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to participate, especially young people and those with a low income.

Discussion Members of the public interviewed for our study expressed a general willingness to take part in epidemiological research. This is consistent with a Canadian postal survey, which found that 85 percent of respondents were willing to participate in health research at least sometimes (Teschke et al. 2010). However, our qualitative study has yielded further findings that have not been reported in studies adopting quantitative methods. Through the rich, contextualised data, we have developed a complex picture of the values and meanings that people attach to participating in epidemiological research. This paper’s findings are indicative of perspectives within mainstream Western societies; they do not apply to Aboriginal or indigenous populations. A strong theme among those interviewed is that they are more willing to participate in health research conducted by a public institution they trust, such as a government health department, university, charity, or hospital, and markedly less willing to be involved in research conducted by private institutions, such as pharmaceutical companies. Broadly, this finding is consistent with the Canadian postal survey of health research participation (Teschke et al. 2010), which found that 68 percent of respondents felt comfortable taking part if contacted by a university and 65 percent if contacted by a hospital; conversely, less than 20 percent felt comfortable if contacted by a private research firm. An important difference between the studies is that, with the exception of those working with people with mental illness, our participants indicated strong overall comfort with research conducted by government health departments. The Canadian survey found less than 50 percent of people were comfortable taking part when contacted by government. This might be explained by a lower level of public trust of government existing in North America nations, i.e., the United States and Canada, compared to Australia (Cook and Gronke 2005). The importance of trust to both the conduct of research and the practice of medicine is a value that has to some extent been rejected as a remnant of paternalism. Its role in underpinning research and medical practice is evident and perhaps worthy of greater interrogation.

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A related prompt for taking part is altruism, public benefit, and the purpose of the study, with those interviewed nominating research on cancer, diabetes, and/or heart disease as deserving support. These motivations are consistent with the findings of a qualitative Canadian study (Kirkland et al. 2009) and a qualitative British/United States study that found altruism and future health benefits to society to be key motivations (Morris and Schneider 2010), although this last study concerned clinical research rather than epidemiological research. Findings also indicate that the public are more inclined to take part in epidemiological research if they or a family member or friend have been affected by the disease under study. Some also argued that there is an obligation to participate in research, especially by allowing routinely collected data to be used in research studies. Some commentators have proposed that prima facie obligations to participate in research may be founded in beneficence (because if acting will result in good, persons acquire a duty to undertake the act) and in the Bfree rider^ argument, which precludes accepting benefit while refusing participation. Schaefer, Emanuel, and Wertheimer (2009) reject these arguments, preferring a Bpublic goods^ account that holds that since (biomedical) Bresearch produces the important benefit of medical knowledge that is an advantage to all, every individual has an obligation to support that system of knowledge generation by participating in biomedical research^ (Schaefer, Emanuel, and Wertheimer 2009, 68). It is clear that epidemiologists wanting to successfully recruit participants should be careful to communicate study purpose, public benefit, and participant involvement as concisely and clearly as possible in their study materials. Readable, eye-catching materials are vitally important in attracting prospective participants. Careful thought should be given to designing studies with limited response burden. Some of our participants suggested that incentives and consumer vouchers may help increase participation, as evidenced in previous research (Buchwald et al. 2006; McSweeney et al. 2009), but this requires further inquiry. The public wishes to know the source of funds for research. This information, together with knowledge about source of participant names and contact details, should be available to prospective study participants in


the first approach or letter. This indicates a desire for transparency and the ability to judge the merits and motives for the research, to know who has vested interests in its findings. Our findings point to a number of future research directions. Further inquiry is needed on motivations and hurdles to participation in specific subpopulations that appear to be under-represented, and in some cases excluded, from existing epidemiological studies. These groups include indigenous people, people of diverse ethnic and linguistic backgrounds within Western populations, and those with mental illnesses. The findings of this study provide insights into participant motivations and into design measures that researchers may consider to simultaneously ensure rigorous data collection, respect for participants, and ethical research conduct. Although further study is necessary, these research findings may also be useful in improving response rates. Acknowledgements We acknowledge receipt of funding from Australia’s National Health and Medical Research Council to conduct the research study from which this paper is drawn.

Source of Support The article is part of a research project BPrivacy and Participation in Epidemiological Research^ funded by The National Health and Medical Research Council (NHMRC), Australia, grant #545957.

Declaration of Conflicting Interests The authors declare no conflict of interest with respect to the authorship and/or publication of this article.

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