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Accessing health services through the back door: a qualitative interview study investigating reasons… Townsend, Anne; Cox, Susan M Oct 12, 2013

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RESEARCH ARTICLE Open AccessAccessing health services through the back door:a qualitative interview study investigating reasonswhy people participate in health research inCanadaAnne Townsend1,2* and Susan M Cox3AbstractBackground: Although there is extensive information about why people participate in clinical trials, studiesare largely based on quantitative evidence and typically focus on single conditions. Over the last decadeinvestigations into why people volunteer for health research have become increasingly prominent across diverseresearch settings, offering variable based explanations of participation patterns driven primarily by recruitmentconcerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature onmotivations to participate in health research. This paper contributes to more recent qualitative approaches tounderstanding how and why people come to participate in various types of health research. We focus on theexperience of participating and the meanings research participation has for people within the context of theirlives and their health and illness biographies.Methods: This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participantsrecruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health researchstudies participated in semi-structured interviews. Participants described their experiences of health researchparticipation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed usingconstant comparisons. Coding and data management was supported by Nvivo-7.Results: A predominant theme to emerge was ‘participation in health research to access health services.’Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) bettercare; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a“trial and error” process akin to research, which further blurred the boundaries between research and treatment.(Continued on next page)* Correspondence: atownsen@exchange.ubc.ca1Department of Occupational Science and Occupational Therapy, Universityof British Columbia, Wesbrook Mall, Vancouver, BC V6T 2B5, Canada2Milan Ilich Arthritis Research Centre, 5591 No. 3 Road, Richmond, BC V6X2C7, CanadaFull list of author information is available at the end of the article© 2013 Townsend and Cox; licensee BioMed Central Ltd. This is an open access article distributed under the terms of theCreative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use,distribution, and reproduction in any medium, provided the original work is properly cited.Townsend and Cox BMC Medical Ethics 2013, 14:40http://www.biomedcentral.com/1472-6939/14/40(Continued from previous page)Conclusions: Our findings have implications for recruitment, informed consent, and the dichotomizing ofmedical/health procedures as either research or treatment. Those with low health status may be more vulnerableto potential coercion, suggesting the need for a more cautious approach to obtaining consent. Our findingsalso indicate the need for boundary work in order to better differentiate treatment and research. It is importanthowever to acknowledge a categorical ambiguity; it is not always the case that people are misinformed about thepossible benefits of research procedures (i.e., therapeutic misconception); our participants were aware that theprimary purpose of research is to gain new knowledge yet they also identified a range of actual health benefitsarising from their participation.Keywords: Human subjects protection, Health research, Therapeutic misconception, Self-managing, Qualitativeresearch, Accessing health services, Informed consent, RecruitmentBackgroundIn this paper we investigate how people come to takepart in health research. Early studies in the medicalbased literature were driven primarily by recruitmentconcerns. Examining motivations to volunteer focusedlargely on disease specific clinical trials [1] and typicallygenerated quantitative evidence that reported participationpatterns [2]. Therapeutic misconception and altruismwere framed as predominant reasons as to why peoplevolunteered. Similarly, the bioethics and social scienceliteratures have identified therapeutic misconception[3-8] and altruism as strongly associated with researchparticipation [9-13].Over the last decade investigations into why peoplevolunteer for health research across diverse researchdesigns have become increasingly prominent [10,14-17].Studies have included a focus on the consent process indifferent contexts e.g. parental proxy consent for childrenin clinical trials [18] and patients’ perceptions of informedconsent in cases of acute myocardial infarcation [19,20].Limkakeng et al’s recent review of the literature aboutresearch participation in emergency medical conditionsshowed that among factors favouring participation,altruism and personal health benefit had the highestfrequency [21]. Other studies have shown how peoplehave reported volunteering for reasons of self-interest[22,23], personal preferences [24,25] the ease of researchtask e.g. nothing to lose in interview studies [26], andcompensation; payment to healthy volunteers can be astrong incentive to participate in a range of studies [27].Other motivating factors identified include the personalsatisfaction of participants [28], aspects of the researchrelationship and the level and nature of informationprovided [29]. The crucial role of trust has also beendiscussed in a range of ways. For example participanttrust (in the institution, the researcher or the researchprotection system) has been indicated as an importantcondition of taking part as opposed to a reason for takingpart [30-33]. A recent study in India examining motivationfor participation in non-therapeutic clinical trials foundthat for patients it was the request from the treatingphysician that was the main motivating factor (88%),while financial reward was the main reason for 65% of thehealthy participants who also reported free medical checkup/personal health gains as important reasons (43%) [34].Increasingly evident is the complexity that underpinsdecisions to volunteer. Stunkel and Grady reviewed theliterature on healthy volunteers for clinical trials and foundthat although financial reward was a strong motivator, itwas not the sole reason to participate. They emphasizedthat individuals relayed multiple reasons to take part inclinical trials [35]. Fry and Dwyer [28] describe howmotivations to participate in research may be betterunderstood as ‘multidimensional reasons’ that combinedirect personal gains and benefits to others. Accordinglydecisions to participate in research can rest on a combin-ation of immediate and personal concerns, which mayinclude practical considerations, levels of interest, theindividual’s ‘relational setting’ and more general values,which guide behaviors, for example, a sense of responsibilityor a wish to contribute knowledge to the community [36].‘Clustered reasoning’ reveals how decisions to volunteerare often more nuanced and complex than suggested bymodels that identify single reasons. The clustered perspectiveemphasizes context and the relational aspects of researchparticipation from the volunteer’s perspective. For example,Hallowell has highlighted how altruism can be temperedby the anticipation of burdensome research tasks [10].Emerging evidence suggests that across research designfrom clinical trials to interviews, potential volunteersbalance the (potentially erroneous) belief of benefitsgained in terms of health care and/or personal interest/satisfaction with the anticipated burdens as well as risks ofparticipation [10]. In this way, research participation isbest understood as multidimensional where contextualfeatures coalesce to enable, facilitate and motivate individ-uals to volunteer.This paper contributes to more recent qualitativeapproaches to understanding why people volunteer fordifferent types of health research. We undertook aTownsend and Cox BMC Medical Ethics 2013, 14:40 Page 2 of 11http://www.biomedcentral.com/1472-6939/14/40contextual analysis [37] to explore the meanings healthresearch participation holds for people in the context oftheir lives and health and illness biographies. We includediverse research designs to gain an understanding ofwide-ranging experiences. We sought to understand the‘lived experience’ of participation, which has thus far beenneglected in the literature. This approach recognizes a‘clustering’ of motivations, while seeking to identify per-sonal priorities of volunteers. The varied health researchdesigns in which our participants had been subjects,offered excellent opportunities to gain insight into themeanings, motivations and contexts of research par-ticipation. Here, we report on a predominant themethat emerged in our analysis; volunteering for healthresearch in order to access health services in threeways: 1) Accessing medicines; 2) Accessing healthcare;3) Accessing technologies for monitoring health.MethodsParticipants and recruitmentThe research reported here was part of phase one of asix-year (2005–2011) three-phase study investigatinghuman subjects’ experiences of health research partici-pation. Our aim was to examine the perspectives ofsubjects and compare them with researcher and researchethics boards/institutional review boards (REB/IRB)members’ perceptions of how subjects experiencedresearch participation. In order to gain multiple perspec-tives for comparative purposes, this phase entailed personalinterviews across a broad range of human subjects, healthresearchers and REB/IRB members, scholars, and policymakers. Our findings are based on the interviews of thehuman subjects who participated in the phase one inter-views. The project design has been described in moredetail elsewhere together with analysis of other salientthemes such as trust [33] and responsibility [36].We recruited 41 participants (38 from British Columbiaand 3 from Manitoba), who had volunteered to participatein one or more health research studies (23 women, 18men) across multiple designs and areas (e.g. clinical,behavioral, public health). Participants lived in a mix ofcommunities, with the majority living in or near largeurban areas with access to hospitals and clinics in thevicinity. This range allowed us to make comparisons,and explore diverse experiences and perspectives. Ouraim was to recruit approximately 40 human subjects. Wedid not anticipate theoretical saturation, but saturation ofresources (e.g. time; data handling) [38]. We also adheredto suitable sampling size in grounded theory [39,40], andguidelines for in-depth analysis of a qualitative dataset[41]. Sampling was purposive [42] designed to yieldmaximum variation sampling. There was also somesnowball sampling in that some participants told othersabout our study but this was not a deliberate strategy. Thisstrategy allowed both an explicit comparison betweencriteria, and maximum variation in order to gain anunderstanding of participation. Because the rationalewas to explore a heterogeneous sample of participantsand identify diverse experiences, we employed multiplerecruitment strategies: poster and media advertisementsin diverse publications and health settings; opportunisticsampling (i.e. social and network connections), andconsultations with relevant communities (such as seniors’care facilities). Potential participants were invited tocontact one of two research coordinators or the principalinvestigator (contact details on recruitment documents) ifthey were interested in participating in our study. One ofthe participants who contacted us did not take part in thescheduled interview because he could not be contactedsubsequent to initial communications. Criteria for parti-cipant eligibility required that individuals were Englishspeaking, had volunteered for one or more health researchstudies, were adults and were living in one of two Canadianprovinces where the research was based, British Columbiaor Manitoba. Individuals reported their health status at thetime of their participation in our study as healthy (16),acutely ill (2), or chronically ill (23). Thirty-nine participantsreported volunteering for one or more health studies thatwe grouped into clinical trials (20), behavioral studies (9),basic biomedical studies (7), and public health studies (3).Although most participants discussed taking part inmore than one research study, we have classified themaccording to the health studies that were most salientin their discussions. (One participant not included inthis tally described volunteering for but then not takingpart in two research studies while another sought usout to describe his deceased father’s forced participationin military research). We audiotaped semi-structuredinterviews (37 face–to-face in non-clinical settings and4 telephone) and a follow-up phone call for clarification asnecessary (5 participants). Interviews were conducted insubjects’ homes, or at a place of their choosing (e.g. theuniversity or a similar setting). The study was approvedby Research Ethics Boards at: the University of BritishColumbia, Vancouver Coastal Health Authority, theUniversity of Manitoba, the University of Winnipeg,St Boniface General Hospital Winnipeg. All participantsgave written informed consent.Qualitative interviewsAn open-ended semi-structured interview guide (seeAdditional file 1) was developed to elicit detailed accounts.The guide was formulated based on the literature reviewconducted prior to fieldwork and discussions involving themulti-disciplinary research team (including researchersfrom medical anthropology, sociology, law, philosophyand ethics). The guide was organized around six broadareas: 1) describing health research studies in whichTownsend and Cox BMC Medical Ethics 2013, 14:40 Page 3 of 11http://www.biomedcentral.com/1472-6939/14/40participants had been involved; 2) exploring participantmotivations to volunteer in previous studies; 3) elicitingexperiences of study participation; 4) probing what itmeans to be a human subject; 5) querying participants’broader views about research participation human subjects;6) asking about specific reasons for participating in ourstudy. Probes and prompts were included in each sectionto encourage participants to reflect on their experiencesand communicate their concerns and priorities in theirown words. The audio-recorded interviews lasted anaverage of 70 minutes (ranging from 45-90 minutes).AnalysisThe interviews were transcribed verbatim and checkedagainst the recordings. Paper based methods, and thesoftware package NVivo 7 were used to manage data.Analysis was iterative, informed by grounded theorystrategies [38]. We compared the transcripts to identifyemergent themes (e.g. reciprocity) and also includeda priori codes based on the interview guide. Threeresearchers read and annotated three transcripts in-dependently with no predetermined coding structure.Initial codes were identified, discussed, clarified andagreed upon after negotiation. These codes includeddecision-making process; personal beliefs; reasons toparticipate; and impact of participation. Each researcherthen coded the remaining transcripts, constantly com-paring, discussing and amending codes. After furtherdiscussion, predominant themes were identified such ashope (for symptom relief and treatment); therapeutic(mis)conception (conceptualizing research as treatment);trust (research relationships). Consistency was looked forbetween and within transcripts, and deviant cases soughtto increase trustworthiness of the analysis. The interviewextracts reported in this paper reflect common concernsdiscussed by the participants either spontaneously or inresponse to an interviewer prompt or probe.Because we sought to identify the practical circum-stances surrounding the experience of volunteering as wellas participants’ attitudes we draw on Fry’s ‘phenomenologyof participation’ [43]. Fry notes: “by examining thephenomenology of research participation—i.e. why andhow people participate in research, and how and whatthey gain from this” we can learn more about volunteermotivation in the context of daily life and the researchenterprise. In so doing we consider both the externaland internal normative bases of research participation.We aimed to address the multi-dimensional factorsinvolved in volunteering for research and sought toidentify those aspects of daily life that became salient atparticular times, focusing on the relational settings ofindividuals and their priorities. Following Fry [43] wesought to understand the context of the pragmatic andcontextual dynamics of daily life and how values we liveby (e.g. altruism) and institutional factors (e.g. availabilityof health services) are translated into normative behaviors(e.g. volunteering for research).ResultsThe participants’ age-range was estimated at n = 25middle-aged (between 40–60) with n = 14 over 65 yearsand n = 2 unknown. Participants self-reported healthstatus was: n = 23 chronic illness, n = 2 acute illness,and n = 16 healthy. Of the n = 41 participants recruited,this analysis is based on the accounts of n = 39 participantswho described participating in a total of 141 health researchstudies between them. As described above, the remainingn = 2 participants had not taken part in research. Researchparticipation ranged from 2 studies to 13; the averagenumber of studies was 3–4 per participant. Most (n = 35)individuals reported ‘clusters’ of factors motivating par-ticipation in health research (e.g. a mix of personal gainand practical contingencies and broader attitudes aboutopportunities to advance knowledge). A minority of partici-pants (n = 4) identified payment as their prime motivator.These included a street involved person (n = 1); students(n = 2); and an unemployed person with a need for ‘pocketmoney’ (n = 1). Others who mentioned compensationdescribed financial reward as insignificant in their decisionto participate (n = 15). Of those who took part in surveysand interviews, several described the combination of easeof research task, their personal interest and making acontribution to knowledge as motivating them. Morethan a third (n = 15) conveyed either being a good citizenor a volunteer as an important part of their identity,although only one participant noted this as an explicitmotivator. Nearly all (n = 16 of n = 20) of the participantswho discussed clinical drug trials hoped for symptomaticrelief or some other kind of health benefit (these includeddrug trials for participants with cancer, HIV and otherchronic conditions such as arthritis). Only 2 who took partin clinical drug trials identified as healthy at the time oftheir trial participation. Both had taken part in a herpesdrug trial; one had done so many years before and thepayment of $500 was the prime motivator; the otherparticipant noted her interest in research combinedwith the fact that she had been a patient at the clinicand trusted the team, as her motivations. Only one per-son who had taken part in a clinical trial relating to hisillness condition (Chronic obstructive pulmonary disease -COPD), which tested the interactions of a ‘flu shot’ withCOPD, reported explicitly that he did not volunteer forhealth benefits. He described how he had been a volunteerthroughout his life, and now at the age of 78, he had aninterest in research, and participating was a way he couldcontinue to volunteer, an identity with which he stronglyidentified. Another participant with diabetes describedparticipating in a clinical trial (testing medications) becauseTownsend and Cox BMC Medical Ethics 2013, 14:40 Page 4 of 11http://www.biomedcentral.com/1472-6939/14/40he was keen to contribute to ‘the cause’ of diabetes, wasinterested in research and out of concern for his grandchil-dren, rather than for personal health or treatment gains.A predominant theme to emerge from the data washow people volunteered for health research in order toaccess health services or health information (for themselvesand/or family members). Twenty-five of the participantsreported that they took part in studies primarily for healthgains, either because they had been diagnosed with chronicor acute conditions, or because they saw participationas a way of monitoring their health and a means to preventillness developing. Here we report on the three predomin-ant ways participants described volunteering for research asa way of accessing health benefits. All themes describedbelow emerged in an inductive manner during the processof data analysis.Accessing medicines through clinical trials: “a way ofdealing with the disease”Of the n = 20 participants who discussed in detail par-ticipating in clinical trials, n = 16 reported that theyvolunteered primarily to access treatment. Entering a drugtrial meant acquiring medication that was unavailable tothem as patients. Many described a ‘process of trial anderror’ with prescribed drugs as they sought symptom/disease control as patients. Most clinical drug trial partici-pants expressed their hope for gaining effective treatment,while contributing to research.People volunteered for studies in their ongoing attemptsto manage illness, relieve their symptoms and controltheir disease. Some reported being recruited by a trustedphysician (general practitioner or specialist), who theyperceived would not put them at risk of harm via re-search. Cost was an added factor. One participant withsevere and debilitating osteoarthritis participated in aVioxx (Rofecoxib) (post-marketing Phase Four) drug trialprimarily in the hope of symptom relief and a way of deal-ing with the disease; her symptoms had proved resistantto prescribed medications. She described how trust in herdoctor and an inability to pay for efficacious medicationswere also factors in her decision:My doctor asked me [to participate]… She said thisdrug was really good… she could start me on thisdrug… I guess she just thought that it might be helpfulto me… I said, “Sure”…. I trusted her. … What I wasusing at the time wasn’t working very well, … Thatway all the drugs would be paid for, which wasGREAT… I was having a hard time getting around, soI thought, well maybe this will work… to alleviate thepain…. a very expensive drug… couldn’t have affordedit… not covered by Pharmacare… risks reasonable.…hard to be this debilitated… I have to deal with it.(813, arthritis, phase 4 clinical trial).This quote illustrates research participation as a way ofovercoming a financial barrier (the cost of the medication)to potentially effective medications. Vioxx (Rofecoxib)via the clinical trial provided much sought relief, andfacilitated a return to this participant’s active life andpaid employment – all conveyed as major benefits.Another participant pursued ongoing medical tests, aseries of different treatments and experienced adversereactions as she sought relief via health care. In this con-text, she participated in the hope of gaining symptom relief:… the respiratory (clinical trial) one, I was asked… ifI’d be willing to participate, by a doctor I was beingtreated by… He said: “There’s absolutely no pressure”…I’d had ALL those tests… for years… I wouldn’t mindparticipating, ‘coz I’d already… done tests… I trustedmy respirologist…. I just went on faith that if mydoctor had asked me to participate, and he knewabout the study, and he knew the doctor that wasrunning the study… everything would be fine (819,chronic cough, clinical trial).The aim of gaining effective treatment motivated thisparticipant to volunteer, while her faith in her doctor’sknowledge of the study increased her level of comfortin participating. This participant was clear about thedifference between research and treatment, but forher, medical treatment involved a series of “differentmedications” and “every test done under the sun”, thusher experiences of research and treatment were similarlyexperimental, i.e. both essentially a process of ‘trial anderror.’Illness and treatment trajectories figured signifcantly indecisions to participate in clinical trials. One participant,newly diagnosed with rheumatoid arthritis conveys howissues of risk changed according to her need for effectivetreatment:I was not only sick, I was having to get my headaround taking noxious chemicals… for the rest of mylife… knowing that I was no longer able to work… thenumber of changes that occurred were catastrophic…so I was dealing with those as well. NOW, myrheumatologist… presented me with the opportunity toparticipate in this trial, and my reaction to that was,“I’m having to take all of the pills that I’m taking now,plus I’m trying to get my head around this, plus I’mtrying to help my family get their heads around this,and you’re asking me to swallow something which isan unknown chemical? I don’t think so!”… Fourmonths later, I just continued to get worse… I wentback to him, and said, “Is this still available?” And hesaid, “Yes, we have one more opening” (207,rheumatoid arthritis, clinical trial).Townsend and Cox BMC Medical Ethics 2013, 14:40 Page 5 of 11http://www.biomedcentral.com/1472-6939/14/40This participant went on to describe how the trialmedications controlled her symptoms and offered reliefthat was unavailable to her via regular health care.Accessing health care through research participation:“feeling well cared for”Some participants volunteered for research to accesscare that was either unavailable to them or difficult toaccess in the health care system. One individual who hadmultiple health issues and took a range of medicationswhich required monitoring, participated in several studiesseeking the care he required for his complex needs: “I hadto go through research to get proper care, to get the BESTcare, it shouldn’t be the way it is, but it often is (202, HIVpositive, clinical trials). Another participant in a drug trialfor cholesterol management described feeling ‘cared for’during the research:Positive things about being in the study; I rememberfeeling very well-cared for, because it was like such aregimented, regular visits… the regular appointmenthealthcare system, you make your appointment to goto the doctor, you wait forever if you have to go to seea specialist…” (815, clinical trial, family history ofcholesterol problems).Others who were diagnosed with conditions that requiredvarious medical treatments as part of their care, welcomedresearch participation to access procedures and knowledgethat was otherwise unavailable to them. HIV and cancerpatients emphasized this point. One participant in a studymonitoring the effects of HIV medications on bone lossreported health benefits of participation:I… was very interested in osteoporosis as a personaltrainer… and then I was getting a free scan for mywhole body for osteoporosis… so it was better care. …the results of that, I was able to find out really quickly.They showed me all of my stuff, which you don’talways get, my bone scans… and my own doctor got allthat. He was able to share all that with me. Now that’sa huge benefit that people don’t often get, is to be able tosee ALL the results (202, HIV, clinical trials).Research offered this participant, as an informed and ac-tive patient, a way of managing his disease. He gained morecomprehensive care, including more time with health careproviders during the study and increased, pertinent person-alized information via access to his medical test results.Accessing research technologies for monitoring health:“getting to know your situation”Accessing technologies offers possibilities for monitoringhealth and obtaining early diagnosis that can prevent orlimit disease and therefore has important ramifications forfuture health and self-care. One participant emphasizedgaining cost-free knowledge in noting the benefits toscreening (e.g. blood tests or a PAP smear): “You’re up tospeed with all sorts of your latest medical exams” (823,healthy, various screenings, multiple studies). This partici-pant considered there was no downside risk; on learningthe results, she would know her health status, and eitherenjoy the relief of knowing all was well or be alerted tothe need to take action for optimum effect. In the currentcontext of self-care, self-management and individualresponsibility, monitoring becomes central to maintaininggood health and preventing disease:… I smoked for thirty years… my concerns were mylungs, so… it would reassure me or not reassure mewhether I was, healthy or not … one of the things… itDID bring… is that I had a scar on my lung… I had togo for CT scans every six months for about two yearsto see that it wasn’t cancerous. And it wasn’t… so theydid a lung… bronchoscopy… I had a lot of lung tests…which I thought was very beneficial, because… you goto the doctor ‘n they’ll say: “Oh, you have a chest,” orwhatever … I just felt like doctors minimize a lot ofthings and this was an opportunity for me to just say,“Okay, now I feel better,” or “Let’s deal with it”… (816,healthy ex-smoker, lung health assessment).Other accounts revealed how the family doctor orspecialist sometimes occupied a central role in researchrecruitment:… it was just my cancer doctor out of the blue sent meon this PET scan –…’advancing beyond an MRI’…. Iwould never have volunteered you don’t seek it out….he wasn’t happy about a lump on my palate. (Twodays later) I got a call from (the clinic receptionist):She said: “I’m from the PET centre”, and I thought Idon’thave a pet’…’ (315, cancer, monitoring disease viaPET scan)The doctor’s role was highlighted by the participant’sphrase ‘out of the blue,’ and miscommunication aboutthe PET scan. He explained that after discussion (withthe receptionist) he participated: “… for my health… Idid because it was part of my cancer” (315, cancer,monitoring disease).Others sought free examinations to monitor generalhealth. For those who reported being healthy and had noknown high risks due to lifestyle or other factors, researchparticipation provided a means of securing a healthcheck-up at no costa. As one participant indicated, the an-ticipated and actual benefits were twofold:Townsend and Cox BMC Medical Ethics 2013, 14:40 Page 6 of 11http://www.biomedcentral.com/1472-6939/14/40Now one of the benefits often that these have is thatyou’re up to speed with all sorts of your latest medicalexam. If in a screening process they take blood, even ifthey’re not looking for this, if they see something, you’llbe advised. And same with a urine test and same witha PAP test, or any kind of test.… you get these examsfor free, and you get to know what’s your situation(823, healthy, multiple studies, various screenings).Research participation was a way of securing specialistcare sooner than it would have otherwise been availableas well as accessing regular appointments. In such exam-ples gaining better care, as the participants perceived it,was a direct, major benefit. This illustrates how activeand informed patients, keen to engage in self-care andmonitor their condition, play an important role in healthresearch. Another participant described how entering re-search gave her information and peace of mind:… so… when they did… the ultrasound of my arteriesand… reported that there was no plaque build-up Iremember thinking “I’m really lucky to be in this study,and have this done“. Because that’s always somethingthat’s in the back of my mind that I’m gonna die of aheart attack, and my arteries are all plugged… so tohear that … I felt like euphoric… and I never would’vehad that test outside the study (815, clinical trial,family history of cholesterol problems).This woman self reported as ‘healthy’ with a familyhistory of heart problems. Although clearly understandingthat she was participating in research (a drug trial), shealso saw the research as health care, in the context of whatshe described as ‘impersonal and inflexible care fromher GP’. The concrete benefits arising from participationincluded gaining new diagnostic information, which easedher prior anxieties about heart disease.Altruism also featured in the accounts of accessinghealth treatments and technologies. For the majority ofparticipants, however, altruism was not a prime motivator.Rather, the participants expressed altruism alongside otherdetermining factors such as hope. For example several weredriven by the hope of gaining personal health benefits whilealso hoping that their actions (e.g. participation in a clinicaltrial) would benefit family members or others with thesame condition. In this way participants’ motivationswere both self and other centred:I suffer from familial-hypercholesterolemia… I supposethat I’m just so keen to have them discover somethingthat would be a viable treatment that I’m willing totake the risks involved, for myself and for others whoare in the same circumstances… (810, cholesterol,clinical trial).DiscussionAnalysis of the 39 in-depth interviews illuminates a coreset of motivating factors that help to explain why manypeople volunteer for health research. Our findings providea contextual understanding, beyond the point of decision atinformed consent, of the meanings research participationholds for individuals in the context of their lives. Extendingbeyond motivators of trust, therapeutic misconception, andaltruism we report participant priorities in terms of per-sonal health, help-seeking and self-management actions.Our analysis reveals the individual context of daily life,and health, illness and treatment trajectories, against thebroader backdrop of the health care system and notionsof the active patient who is encouraged to self-manage.Thus, these findings prompt reflection on access issues.If participants are participating in research, such asclinical trials to gain access to services and care, this hasimplications for researchers and the consent process, butit is also a (somewhat negative) commentary on how weprovide access to healthcare (or fail to).For many of our participants, the direct benefit ofaccessing treatment, care and/or information was a primemotivator for volunteering in health research. While factorssuch as trust were important, pragmatic concerns played agreater role in shaping action. The accounts featured herealso highlight the contextual significance of seeking carein an overburdened health care system.Participant accounts included a range of researchdesigns, in the context of diverse lives, and health andillness circumstances. Participant experiences however,were anchored in broadly shared cultural and structuralsystems. For example, accounts illustrated common valuessuch as responsibility (in terms of a commitment tohonest and sincere participation in the research) [36]and altruism (which reportedly influenced but typicallydid not drive actions). Institutional values includedtrust in health care systems, and support for the pursuitof knowledge and the scientific endeavor [33]. Thosewho took part in behavioral studies typically consideredthe research tasks and participation to be relativelyinnocuous or non-intrusive (e.g., surveys, interviews); forsome they were an opportunity to satisfy an interest orshare their experience. Participation was influenced bythe practical circumstances of daily life and the perceivedburden or convenience of research tasks. Most prominentin the accounts however, was the framing of researchparticipation as a way of gaining direct benefits ofaccessing health services that were otherwise unavailableor difficult to obtain (treatments, technological monitoring,more care, gaining health information) [44]. Researchparticipation for many of our participants offered accessto treatment and was part of a help-seeking process inlives fraught with illness, occupied by the search forsymptom relief or the hope of prolonging life. ThereTownsend and Cox BMC Medical Ethics 2013, 14:40 Page 7 of 11http://www.biomedcentral.com/1472-6939/14/40has been some evidence in studies of this phenomenon.For example, others have shown how research par-ticipation in emergency settings is regarded as havingdirect health benefits, in some cases over and abovewhat the health care system can offer [19-21,45,46]. Ouranalysis also revealed how people used research as astrategy to self-manage their health conditions. Thus, itwould be a mistake to broadly construe their motivationsto participate in health research as a form of therapeuticmisconception, “the notion that unless otherwise informed,research subjects will assume (especially, but not exclu-sively, in therapeutic research) that decisions about theircare are being made solely with their benefit in mind” [3]Our participants appeared to have no such illusions.Thus it may be appropriate to coin a new phrase forthis, that of ‘therapeutic research participation”. Ourparticipants seemed to be well aware of the risks theyfaced, the uncertainty of direct therapeutic benefit and thelimits of research. In several cases participants very clearlyindicated that they sought the ancillaries of research:human contact; routine; observation and testing. Thisis important because it positions participants as patients,as well informed, actively help-seeking, self-caring (takingbroad actions for health) and self-managing (e.g. man-aging symptoms through access to proven effectivemedications).Various studies investigating research participation haveidentified how participants’ accounts portray complexand layered experiences overall and blurred boundariesbetween patient and participant, physician and researcherand treatment and research [44,47]. Hallowell and col-leagues [47] identify how patients find it difficult todifferentiate genetic testing from care and how clinicalresearch participants conflate these activities. We foundsomething different. Our participants did not conflateor fail to differentiate between research and care [48].But, they accessed treatment, care and screening (healthinformation) through research, while being quite awarethat the research (for many of them like healthcare) doesnot offer direct promise of therapeutic benefit. There wassome evidence of this in Gammelgaard et al’s [19] researchwhereby at least some of the participants identified howthey felt they could access more sophisticated technologywhich would be of greater benefits to them in emergencysituations, at the same time recognizing that they wereparticipating in research (although many were confusedabout whether the procedures they had agreed to wereresearch or treatment).In particular, people with chronic conditions have anestablished and ongoing biography of illness [49]. Thisinvolves accessing healthcare and help seeking for symptomcontrol or to limit the impact and course of disease [50].In this context, for the majority of participants in ourstudy, health research participation was an integral part ofoverall self-management and help-seeking experience [44].This blurring of research and treatment is underlined whenwe consider how patients with multiple morbidities areprescribed complex drug regimens and suffer adverseeffects in a (drug) ‘trial and error’ process as their physician‘experiments’ with their treatment program [51]. In thisway, people with life threatening or complex illness condi-tions often experience health services care as experimental.It is important to note that when people participate inhealth research to access health services, tensions emerge.In a system that dichotomizes research and treatment,contradictions arise if participants view research asresearch and as treatment; the two are not mutuallyexclusive, but inextricably bound. If these ‘categoricalambiguities’ [47] are surfaced we can gain more insightinto the ‘lived experience’ of research participation.In highlighting what amount to, for some, ‘indivisibledistinctions between research and treatment’ significantquestions are raised about: the extent to which this occursand how far health professionals perceive research astreatment. It also prompts discussion about how far thedistinction between research and treatment can be sharplydivided, in that medicine is not an exact science, andexperimental trial and error, as well as risks and benefits,far from being the province of research is widespread inthe practice of medicine.The implications of our findings then are not just rele-vant to understanding the motivations of volunteers. Thefindings shed light on what may be a serious flaw in theintersection of health care and health research. If potentialparticipants rightly or wrongly believe that access tonormal care, information or treatment can be fast-trackedthrough a kind of Nexus line of research participation,then something has truly gone wrong with health servicesdelivery and provision. For the research enterprise itsuggests a kind of subtle coercion of participants in thatwhether or not they gain health benefits, they are open torisk in a way that they would not be were they able toreadily access standard procedures. We are well aware thatstandard wording in consent forms is meant to excludethis possibility. However, there are worrisome indicationsin our data that participants see the situation differentlyand it may well be that policy-makers are blinding them-selves to current realities, and that the quality of humansubjects protection is compromised [52].Study limitationsWe did not include non-participants in our study, andso were unable to investigate this perspective, whichwould no doubt offer additional insight into salient factorsor circumstances that mitigate against as well as promoteresearch participation. Although some people expressedhypothetical aversions to participation, in clinical trials forexample, we cannot be sure that in real life circumstancesTownsend and Cox BMC Medical Ethics 2013, 14:40 Page 8 of 11http://www.biomedcentral.com/1472-6939/14/40they would decline. The topic of research participationmay have meant that those who had a particular story totell or a particular interest in research were more likely toparticipate. The context of giving accounts in researchmay be problematic too as people tend to present positiveidentities in interviews by drawing on cultural assumptionsabout appropriate behaviors. This may influence howpeople frame their participation in terms of, for example,altruism or logical motivations. We did not circulate ourfindings to participants to cross check whether theymight have identified discrepancies with our interpretationalthough we did, during the interviews, confirm emergentunderstandings and summarize them at the conclusion.Also, we have no record of the patient physician con-versations and how recruitment unfolded. The detailedaccounts and iterative and comparative analysis however,offered insights into experiences of how people came totake part in a range of health studies, in the context oftheir illness experience, and the perceived benefits of theresearch in which they participated.ConclusionOur findings have implications for recruitment, in-formed consent, and the dichotomizing of medical/health procedures as either research or treatment. Healthstatus influenced how individuals perceived risks andbenefits, and trust in research. This has a bearing on vul-nerability and potential coercion, which could include‘deliberate or inadvertent exploitation of vulnerability’during informed consent for clinical drug trial participa-tion, particularly for the profoundly ill. This calls for amore cautious consent process. Potential participantsneed to recognise that they are giving consent for some-thing (e.g. a procedure) that may offer treatment, bettercare, or diagnostic possibilities in addition to researchparticipation, but health professionals (in theory) andthe formalized system clearly differentiate these. Thisposes problems for researchers who need to understandthat although participants may fully understand the aimof a procedure is to gain research data, they may be mo-tivated to volunteer in the hope that participation willmake their life better, or longer. This is consistent withthe need for boundary work in order to demarcate thedifference between treatment and research, but also toacknowledge that there is categorical ambiguity. Ourfindings highlight that while many participants mayrecognize research as research they may still participatein order to access (otherwise unavailable) health servicesin a range of forms. Accessing health services throughresearch participation also offers a different perspectiveon the concept of therapeutic misconception byhighlighting systemic inequities in health delivery as afundamental condition shaping the desire to participatein research. An important structural issue is also raisedabout how the context of research recruitment isshaped. It also poses the question: Are the most vulner-able and those with the fewest health care alternativestaking substantially greater risks than (and for) the restof the population? If research is a means of accessingtreatment, we must be concerned about the context inwhich decisions about research participation are madeand the potential that this has for skewing participantsampling and the outcomes of health research, includingclinical trials. Caution must be advocated whenattempting to establish participants’ motives for becom-ing involved in different types of research and greater at-tention must be given to ascertaining the consequencesof seeking treatment, care or health information throughthe ‘back door’ of research participation.EndnotesaThe Medical Services Plan (MSP) insures medicallyrequired services provided by physicians and supple-mentary health care practitioners, laboratory services anddiagnostic procedures. In British Columbia best practicefor physicians is not to routinely provide annual physicalexams unless the physician determines they are in thepatients’ best interests.Additional fileAdditional file 1: Interview guide.AbbreviationsCOPD: Chronic obstructive pulmonary disease.Competing interestsThe authors declare that they have no competing interests.Authors’ contributionsAT undertook some of the interviews, lead the specific thematic analysis andinterpretation of the data set and the writing of all drafts. SC undertook alarge proportion of the interviews, analyzed and interpreted the data, andcontributed to all drafts of the paper. Both authors read and approved thefinal manuscript.Authors’ informationAT is a medical sociologist and research associate at the University of BritishColumbia (UBC). AT is a Co-investigator on the project. SC is an AssociateProfessor at the Maurice young Centre for Applied Ethics (UBC). SC is thelead Principal Investigator on the project.AcknowledgementsThe authors are grateful for the support of the participants who shared theirtime and experiences. We also thank Natasha Damiano Paterson and KimTaylor the research assistants for their contributions throughout the projectand Professor Michael McDonald, Co-Principal investigator, for his reflectionsand comments. Special thanks go to Sara Hancock and Darquise Lafrenierefor their contributions to data analysis and discussions. We also thank thereviewers for their comments and suggestions.FundingThis research was funded by the Canadian Institutes of Health Research(CIHR), Operating grant competition # 77671.Townsend and Cox BMC Medical Ethics 2013, 14:40 Page 9 of 11http://www.biomedcentral.com/1472-6939/14/40Author details1Department of Occupational Science and Occupational Therapy, Universityof British Columbia, Wesbrook Mall, Vancouver, BC V6T 2B5, Canada. 2MilanIlich Arthritis Research Centre, 5591 No. 3 Road, Richmond, BC V6X 2C7,Canada. 3W. Maurice Young Centre for Applied Ethics, School of Populationand Public Health, University of British Columbia, 227-6356 Agricultural Rd,Vancouver, BC V6T 1Z2, Canada.Received: 16 April 2013 Accepted: 1 October 2013Published: 12 October 2013References1. Cox K: Informed consent and decision-making: patients’ experiences ofthe process of recruitment to phases I and II anti-cancer drug trials.Patient Educ Couns 2002, 46:31–38.2. 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Green LA, Lowery JC, Kowalski CP, Wyszewianski L: Impact of institutionalreview board practice variation on observational health servicesresearch. Health Serv Res 2006, 41:214–230.doi:10.1186/1472-6939-14-40Cite this article as: Townsend and Cox: Accessing health servicesthrough the back door: a qualitative interview study investigatingreasons why people participate in health research in Canada. BMCMedical Ethics 2013 14:40.Submit your next manuscript to BioMed Centraland take full advantage of: • Convenient online submission• Thorough peer review• No space constraints or color figure charges• Immediate publication on acceptance• Inclusion in PubMed, CAS, Scopus and Google Scholar• Research which is freely available for redistributionSubmit your manuscript at www.biomedcentral.com/submitTownsend and Cox BMC Medical Ethics 2013, 14:40 Page 11 of 11http://www.biomedcentral.com/1472-6939/14/40


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