Analysis of the 39 in-depth interviews illuminates a core set of motivating factors that help to explain why many people volunteer for health research. Our findings provide a contextual understanding, beyond the point of decision at informed consent, of the meanings research participation holds for individuals in the context of their lives. Extending beyond motivators of trust, therapeutic misconception, and altruism we report participant priorities in terms of personal health, help-seeking and self-management actions. Our analysis reveals the individual context of daily life, and health, illness and treatment trajectories, against the broader backdrop of the health care system and notions of the active patient who is encouraged to self-manage. Thus, these findings prompt reflection on access issues. If participants are participating in research, such as clinical trials to gain access to services and care, this has implications for researchers and the consent process, but it is also a (somewhat negative) commentary on how we provide access to healthcare (or fail to).
For many of our participants, the direct benefit of accessing treatment, care and/or information was a prime motivator for volunteering in health research. While factors such as trust were important, pragmatic concerns played a greater role in shaping action. The accounts featured here also highlight the contextual significance of seeking care in an overburdened health care system.
Participant accounts included a range of research designs, in the context of diverse lives, and health and illness circumstances. Participant experiences however, were anchored in broadly shared cultural and structural systems. For example, accounts illustrated common values such as responsibility (in terms of a commitment to honest and sincere participation in the research)  and altruism (which reportedly influenced but typically did not drive actions). Institutional values included trust in health care systems, and support for the pursuit of knowledge and the scientific endeavor . Those who took part in behavioral studies typically considered the research tasks and participation to be relatively innocuous or non-intrusive (e.g., surveys, interviews); for some they were an opportunity to satisfy an interest or share their experience. Participation was influenced by the practical circumstances of daily life and the perceived burden or convenience of research tasks. Most prominent in the accounts however, was the framing of research participation as a way of gaining direct benefits of accessing health services that were otherwise unavailable or difficult to obtain (treatments, technological monitoring, more care, gaining health information) . Research participation for many of our participants offered access to treatment and was part of a help-seeking process in lives fraught with illness, occupied by the search for symptom relief or the hope of prolonging life. There has been some evidence in studies of this phenomenon. For example, others have shown how research participation in emergency settings is regarded as having direct health benefits, in some cases over and above what the health care system can offer [19–21, 45, 46]. Our analysis also revealed how people used research as a strategy to self-manage their health conditions. Thus, it would be a mistake to broadly construe their motivations to participate in health research as a form of therapeutic misconception, “the notion that unless otherwise informed, research subjects will assume (especially, but not exclusively, in therapeutic research) that decisions about their care are being made solely with their benefit in mind”  Our participants appeared to have no such illusions. Thus it may be appropriate to coin a new phrase for this, that of 'therapeutic research participation”. Our participants seemed to be well aware of the risks they faced, the uncertainty of direct therapeutic benefit and the limits of research. In several cases participants very clearly indicated that they sought the ancillaries of research: human contact; routine; observation and testing. This is important because it positions participants as patients, as well informed, actively help-seeking, self-caring (taking broad actions for health) and self-managing (e.g. managing symptoms through access to proven effective medications).
Various studies investigating research participation have identified how participants’ accounts portray complex and layered experiences overall and blurred boundaries between patient and participant, physician and researcher and treatment and research [44, 47]. Hallowell and colleagues  identify how patients find it difficult to differentiate genetic testing from care and how clinical research participants conflate these activities. We found something different. Our participants did not conflate or fail to differentiate between research and care . But, they accessed treatment, care and screening (health information) through research, while being quite aware that the research (for many of them like healthcare) does not offer direct promise of therapeutic benefit. There was some evidence of this in Gammelgaard et al’s  research whereby at least some of the participants identified how they felt they could access more sophisticated technology which would be of greater benefits to them in emergency situations, at the same time recognizing that they were participating in research (although many were confused about whether the procedures they had agreed to were research or treatment).
In particular, people with chronic conditions have an established and ongoing biography of illness . This involves accessing healthcare and help seeking for symptom control or to limit the impact and course of disease . In this context, for the majority of participants in our study, health research participation was an integral part of overall self-management and help-seeking experience . This blurring of research and treatment is underlined when we consider how patients with multiple morbidities are prescribed complex drug regimens and suffer adverse effects in a (drug) 'trial and error’ process as their physician 'experiments’ with their treatment program . In this way, people with life threatening or complex illness conditions often experience health services care as experimental.
It is important to note that when people participate in health research to access health services, tensions emerge. In a system that dichotomizes research and treatment, contradictions arise if participants view research as research and as treatment; the two are not mutually exclusive, but inextricably bound. If these 'categorical ambiguities’  are surfaced we can gain more insight into the 'lived experience’ of research participation. In highlighting what amount to, for some, 'indivisible distinctions between research and treatment’ significant questions are raised about: the extent to which this occurs and how far health professionals perceive research as treatment. It also prompts discussion about how far the distinction between research and treatment can be sharply divided, in that medicine is not an exact science, and experimental trial and error, as well as risks and benefits, far from being the province of research is widespread in the practice of medicine.
The implications of our findings then are not just relevant to understanding the motivations of volunteers. The findings shed light on what may be a serious flaw in the intersection of health care and health research. If potential participants rightly or wrongly believe that access to normal care, information or treatment can be fast-tracked through a kind of Nexus line of research participation, then something has truly gone wrong with health services delivery and provision. For the research enterprise it suggests a kind of subtle coercion of participants in that whether or not they gain health benefits, they are open to risk in a way that they would not be were they able to readily access standard procedures. We are well aware that standard wording in consent forms is meant to exclude this possibility. However, there are worrisome indications in our data that participants see the situation differently and it may well be that policy-makers are blinding themselves to current realities, and that the quality of human subjects protection is compromised .
We did not include non-participants in our study, and so were unable to investigate this perspective, which would no doubt offer additional insight into salient factors or circumstances that mitigate against as well as promote research participation. Although some people expressed hypothetical aversions to participation, in clinical trials for example, we cannot be sure that in real life circumstances they would decline. The topic of research participation may have meant that those who had a particular story to tell or a particular interest in research were more likely to participate. The context of giving accounts in research may be problematic too as people tend to present positive identities in interviews by drawing on cultural assumptions about appropriate behaviors. This may influence how people frame their participation in terms of, for example, altruism or logical motivations. We did not circulate our findings to participants to cross check whether they might have identified discrepancies with our interpretation although we did, during the interviews, confirm emergent understandings and summarize them at the conclusion. Also, we have no record of the patient physician conversations and how recruitment unfolded. The detailed accounts and iterative and comparative analysis however, offered insights into experiences of how people came to take part in a range of health studies, in the context of their illness experience, and the perceived benefits of the research in which they participated.