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Triangulating perspectives on functional neuroimaging for disorders of mental health Anderson, James A; Mizgalewicz, Ania; Illes, Judy Aug 8, 2013

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RESEARCH ARTICLE Open AccessTriangulating perspectives on functionalneuroimaging for disorders of mental healthJames A Anderson, Ania Mizgalewicz and Judy Illes*AbstractBackground: Functional neuroimaging is being used in clinical psychiatry today despite the vigorous objections ofmany in the research community over issues of readiness. To date, a systematic examination of the perspectives ofkey stakeholders involved in this debate has not yet been attempted. To this fill this gap, we interviewedinvestigators who conduct functional neuroimaging studies involving adults with mood disorders, schizophrenia,obsessive compulsive disorder, and/or attention deficit hyperactivity disorder, providers who offer clinicalneuroimaging services in the open marketplace, and consumers of these services, in order to understandperspectives underlying different views and practices.Methods: Semi-structured interviews were conducted over the telephone. Verbal consent was obtained and allinterviews were audio recorded. Interviews of investigators and service providers followed the same interviewguide. A separate set of questions was developed for consumers. All interviews were transcribed and madesoftware ready. We applied the qualitative methodology of constant comparison to analyze the data, whereby tworesearchers independently analyzed the results into textual themes. Coding discrepancies were discussed untilconsensus was achieved.Results: Investigators, service providers, and consumers held many common perspectives about the potential oractual risks and benefits of functional neuroimaging for mental illness. However, we also found striking divergences.Service providers focused on the challenges posed by the persistence of symptoms based diagnostic categories,whereas the limitations of the science in this area was the challenge noted most frequently by investigators. Themajority of consumers stated that their expectations were met.Conclusion: Our findings point toward a fundamental tension between academic investigators on the one hand,and commercial service providers and their customers on the other. This scenario poses dangers to thecommunities directly involved, and to public trust in science and medicine more generally. We conclude withrecommendations for work that needs to be done to minimize tensions and maximize the potential ofneurotechnology through concerted efforts to respect its limitations while leveraging the strengths, investments,and hopes of each stakeholder group.BackgroundMillions of people worldwide are affected by mental dis-orders such as depression, bipolar disorder, schizophre-nia, post-traumatic stress disorder and anxiety disorders.In 2011, the World Health Organization reported thatdisorders of mental health are the leading causes of dis-ability adjusted life years worldwide, accounting for 37%of healthy years lost from non-communicable diseases[1]. A recent report by the World Economic Forum esti-mated the global cost of mental illness at nearly USD$2.5 trillion in 2010, with a projected increase to overUSD $6 trillion by 2030 [2]. In the USA, an estimated 11million American adults (approximately 5% of all adults)suffer from a seriously disabling mental illness [3]. Theindirect and direct costs associated with mental illnessin the USA have been estimated to be $300 billion annu-ally [4]. The projected budget for the USA-based Na-tional Institute of Mental Health (NIMH) – the largestfunder of mental health research in the world – was$1,479,204,000 [5], with more than two thirds of that* Correspondence: jilles@mail.ubc.caDivision of Neurology, Department of Medicine, National Core forNeuroethics, University of British Columbia, Vancouver, British Columbia,Canada© 2013 Anderson et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited.Anderson et al. BMC Psychiatry 2013, 13:208http://www.biomedcentral.com/1471-244X/13/208budget slated for research that aims to improve the un-derstanding of the fundamental biology of mental disor-ders, and the translation of those findings into improvedprevention, diagnosis, treatment selection and monitor-ing [5]. Research studies employing various neuroimag-ing technologies consume a significant portion of thisbudget. With this as backdrop, our goals here were to:(1) elucidate the perspectives and beliefs of key stake-holders on the scientific state of the art in, and potentialfor the clinical translation of, neuroimaging and mentalhealth; and (2) to offer guidance based on the results forclosing knowledge gaps, bridging hopes and tensions,and translating knowledge into action.Our work is motivated by the central role that structuraland functional neuroimaging have played in the search fora biological foundation for psychiatry. In 1976, Johnstoneand colleagues demonstrated that patients with schizo-phrenia had enlarged cerebral ventricles [6], delineatingfor the first time the neural correlates of a psychiatric ill-ness. In more recent years, neuroimaging researchers haveused structural as well as functional signals to explore anddiscover the biological bases of mental illness.A major focus of contemporary neuroimaging research isthe identification of imaging biomarkers. Radioligands thatbind to neurotransmitter receptors and transporters havebeen used to measure target occupancy for use in proof ofmechanism studies, and to determine required dosage fornew antipsychotic drugs [7] and anti-depressants [8].Multivoxel pattern analysis has been used to develop im-aging biomarkers for the detection of prodromal schizo-phrenia [9], and diffusion tensor imaging has been appliedto the early detection of first episode psychosis in schizo-phrenia [10] and ASD in children [11].Imaging genetics has also offered significant insights,allowing researchers to characterize the molecular path-ways of neurological and mental health disorders [12].Researchers working in this area have focused on threetypes of variants: functional variants with a knownneurochemical effect [13,14]; common variants whichare known to make a small or medium sized contribu-tion to disease risk [15,16]; and rare variants which areknown to make a large contribution to disease risk[17,18]. Substantial progress has also been made usinggenome-wide association studies (GWAS) that identifyrisk variants for psychiatric diseases in the absence ofknowledge concerning their function. For example, sev-eral single-nucleotide polymorphisms on genes codingfor subunits of the GABA-A receptor have been associ-ated with bipolar disorder using GWAS [19].Finally, imagers have begun to focus on simple behav-ioural states and traits associated with particular mentaldisorders. This research strategy is based on the suppositionthat it is easier to reliably identify the neural correlates ofsimple behavioural states and traits than the complexphenotypes typical of most mental disorders. This strategyhas had success. For example, researchers working with pa-tients with schizophrenia have used this approach to iden-tify the neural activation patterns associated with verbalhallucinations by asking patients suffering from auditoryverbal hallucinations to report the on- and offset of thevoices [20-22].Despite the importance of these breakthroughs, the overallprogress in diagnostic and prognostic imaging biomarkersof mental disorders has been slower than anticipated.According to many experts in the field, diagnostic and prog-nostic imaging biomarkers – genetic or otherwise – remaina long way from clinical application [23-25].Academic viewpoints notwithstanding, early adoptersoffer neuroimaging to mental health consumers on the openmarket in the USA and Canada. The homepage on the web-site of a prominent North American provider states:[We are] highly effective at helping people of all ageshave better brains and better lives. Our success rate isvery high by using detailed evaluations and brainSPECT [single photon emission tomography] imagingto better target treatment [26].Their website provides detailed information concerninghow brain scans can help persons suffering from a varietyof disorders. For example, the website says SPECT canspecifically reach people with anxiety and depression byhelping them to: evaluate whether or not the person hasanxiety or depression, determine the type of anxiety or de-pression to inform treatment decisions, determine if treat-ment is effective, assess for the presence of co-occurringconditions, reduce emotional pain and stigma by demon-strating that symptoms and behaviors are not imaginary,increase treatment compliance, and gain a better under-standing of mental illness [26].Similar potential benefits – related to diagnosis, treat-ment selection, treatment monitoring, de-stigmatization,compliance, and understanding – are noted for personswith attention disorders, addictions, autism spectrum,behavioural problems, brain injury, marital conflict,memory issues, and weight issues [26]. To our know-ledge, neither primary nor secondary insurance coverageis available for these services in any health system; cus-tomers pay out-of-pocket. The clinic quoted above offerscustomers “CareCredit” with 0% financing to enable pro-spective consumers to purchase neuroimaging serviceswithout delay.The practice has drawn heated criticism from main-stream psychiatry. Although papers on the use of SPECTscans in psychiatry [27-32] have been published and pro-viders claim that the work is “based on hundreds of textsand scientific articles” [33], critics contend that the pub-lications do not support the use of SPECT imaging inAnderson et al. BMC Psychiatry 2013, 13:208 Page 2 of 11http://www.biomedcentral.com/1471-244X/13/208psychiatric practice [34]. In support of this contention,critics cite the 2006 Practice Guidelines issued by theAmerican Psychiatric Association [35] which state that:… the clinical utility of neuroimaging techniques forplanning of individualized treatment has not yet beenshown. Further research is needed to demonstrate aclinical role for structural and functional neuroimagingin establishing psychiatric diagnoses, monitoring illnessprogression, and predicting prognoses [36].A major review of neuroimaging in psychiatry pub-lished in the January 2012 issue of Neuron suggests thatthe APA’s position remains current. According to the au-thor, neuroimaging“… so far has not yielded clinically relevantbiomarkers for [disease, prognosis, or treatment of]mental disorders” [23].Objections to the direct-to-consumer approach, how-ever, are not merely academic. Critics charge that thefor-profit sector is jeopardizing public trust in the fieldand putting patients at risk. These charges are summa-rized in a 2010 letter published in the American Journalof Psychiatry:There are several dangers to patients that can accruefrom [this] approach: 1) patients (including children) areadministered a radioactive isotope without sound clinicalrationale; 2) patients pursue treatments contingent uponan interpretation of a SPECT image that lacks empiricalsupport; and 3) based on a presumed diagnosis…,patients are guided toward treatment that may detractthem from clinically sound treatments [34].Although the battle lines in this acrimonious debateseem to be drawn, it is important to note that – to date – asystematic examination of the perspectives of key stake-holders involved has not yet been attempted. To this fillthis void, we interviewed neuroimaging researchers, pro-viders of neuroimaging services, and consumers of theseservices. Our goals were to: (1) elucidate the perspectivesof researchers on the state of the art in translational neuro-imaging research; (2) understand the opinions of providerscurrently offering functional neuroimaging clinically; and(3) explore the expectations and experiences of consumersof these services. From the triangulation of these findings,we offer guidance for translating of the resulting know-ledge into action.MethodsThis study was reviewed and approved by the behav-ioural research ethics board at the University of BritishColumbia. Informed consent was obtained from all par-ticipants. We conducted semi-structured interviewswith: 1) investigators who conduct functional neuroim-aging studies involving adults with mood disorders,schizophrenia, obsessive compulsive disorder, and/or at-tention deficit hyperactivity disorder; 2) providers whoconduct or order functional neuroimaging examinationsclinically in this population; and 3) consumers who, inorder to obtain information related to mental, psycho-logical, or emotional health, have purchased brain scansor have had brains scans purchased for them.RecruitmentInvestigatorsAcademic investigators involved in functional neuroim-aging research related to mood disorders (bipolar andunipolar disorders), schizophrenia, obsessive compulsivedisorder (OCD), and/or attention deficit disorder(ADD)/attention deficit hyperactivity disorder (ADHD)who were fluent English speakers were identified using acombination of purposive and snowball samplingmethods. We conducted two targeted searches of theUSA-based National Institutes of Health (NIH) Re-PORTER database. The first search involved the searchterms: “SBIR/STTR” AND “Functional neuroimaging”AND “Mental Health.” The second search utilized thesearch terms: “RO1 equivalents, DP2, RO1, R23, R29,R37” AND “functional neuroimaging” AND “mentalhealth.” We also conducted a parallel search of theCanadian Institutes of Health Research (CIHR) fundedresearch database using the search terms: (any of thephrases) mood, bipolar, anxiety, schizophrenia AND(any of the phrases) imaging. An initial set of prospect-ive participants was created from the search returns.Additional participants were identified via snowballsampling.Service providersClinicians working at clinics that offer clinical neuroim-aging services related to mood disorders (bipolar andunipolar disorders), schizophrenia, OCD, and ADD/ADHD were also identified using purposive and snow-ball sampling. We created an initial set of potential par-ticipants by searching the Internet for clinicians whosatisfied the above eligibility criteria. We then usedsnowball sampling to identify additional eligible partici-pants not identified in the initial search.ConsumersMen and women age 19–75 who, in order to obtain in-formation related to mental, psychological, or emotionalhealth, had purchased brain scans or had had brainscans purchased for them, who had the capacity tounderstand the nature of the study, who could provideAnderson et al. BMC Psychiatry 2013, 13:208 Page 3 of 11http://www.biomedcentral.com/1471-244X/13/208verbal informed consent, and who are fluent in Englishwere identified through one of four recruitment strat-egies: (1) Google ad linked to key words “brain MRI im-aging,” “SPECT,” MRI scan of the head,” “brain scanresults,” brain MRI scan,” and “cost of brain MRI scan,”with a one-line description of the study, and a link to arecruitment poster posted on the homepage of the au-thors’ organizational website; (2) Craigslist ad (SanFrancisco) with a one-line description of the study, anda link to the homepage of the authors’ organizationalwebsite; (3) ads on five top rated mental health websitesas rated by the analytic site ‘compete.com’ at the time ofrecruitment, with a one-line description of the study,and the link to the recruitment poster; and (4) poster onthe website or in the newsletter of service providers.Data collection and analysisData for this study constituted open answers to questionsposed during semi-structured interviews designed to takeapproximately 30 min. All interviews were conducted overthe telephone. Verbal consent was obtained and all inter-views were audio-recorded. Confidentiality was achievedby assigning an alphanumeric identifier to each participantand immediately disassociating names from responses.Interviews of investigators and service providers followedthe same interview guide. Questions focused on a range ofsalient issues including the focus of their research on thecontinuum from basic research to clinical application, chal-lenges, and the future of functional neuroimaging research.The questions are summarized in Table 1. This table alsosummarizes the parallel but separate set of questions devel-oped for consumers.AnalysisAll interviews were transcribed and made software ready(NVivo 9, QSR International). We applied the qualitativemethodology of constant comparison to analyze thedata, whereby two researchers independently examinedthe transcriptions. This involved segmenting raw data,labelling and coding, while searching for patterns ofintersection. Major themes and their constituent sub-themes were counted only once even if they appearedmore than once in a given transcript to provide controlfor individual biases. We applied an interpretative anditerative process, critically analyzing and conceptualizingthe results into textual themes [37-41]. Coding discrep-ancies were highlighted and discussed between twotrained coders to achieve consensus. Dominant themesand subthemes emerged from the triangulation of all as-pects of the analysis. Quotations presented in Resultsbelow were chosen for their representativeness of thephenomena identified and described.ResultsTables 2, 3 and 4 shows the full range of themes andsubthemes derived from the analysis, and their distribu-tion and frequency of occurrence across interviews withinvestigators, providers, and consumers. We presentprominent themes as they emerged from the codingstrategy. Full details of the constituent subthemes areshown in the tables. We provide illustrative quotationsin the text below to enrich the data.InvestigatorsAltogether thirty-six investigators were invited by email toparticipate. Twenty-two investigators completed the study,at which point recruitment was terminated due to theoret-ical saturation [39,40] of the data. Twenty of the twenty-two investigators viewed their work in at least partly trans-lational terms on the spectrum from bench research tobedside care, with two describing their work in purelybasic or non-translational terms. The investigators in theformer group located their work at various, sometimesoverlapping stages on the translational pathway. Eighteenof these investigators viewed their work as preparatory toclinical studies proper – what we called “developing toolsfor clinical translation.” Ten of the investigators reportedthat they were participating in clinical studies.Six major themes emerged as determined by their preva-lence in the discourse of the participants interviewed(Table 2):(1) Goals: Improving and facilitating treatment choice forpeople with mental illness emerged as the dominantcode under the theme of goals. For example,The current purpose of my work is to understandbrain mechanisms of how people get better fromTable 1 Summary of interview questionsInvestigators and service providers Consumers• Location of research on a continuum from basic research to clinical application • Sources of information about functional neuroimaging• Focus of efforts • Features of interest in about brain scans• Challenges faced in research and practice • Motivation to pursue a brain scan• Barriers to clinical translation of functional neuroimaging • Knowledge gained• Necessity of prospective clinical trials • Impact of experience• Risks and benefits to patient-participants • Expectations and level of satisfaction with experience and brain scanAnderson et al. BMC Psychiatry 2013, 13:208 Page 4 of 11http://www.biomedcentral.com/1471-244X/13/208depression and anxiety… There are two purposes forthis. One is to create personalized treatmentalgorithms. That is to better refer people to treatmentsthat they would likely benefit from. And two, to help torefine the treatments that exist, or create treatmentsthat more effectively target brain mechanismsassociated with disease which are not targeted incurrent treatments (NII007).(2) Challenges: Investigators identified a broad range ofchallenges associated with research in the area ofneuroimaging for mental health disorders.Limitations related to the state of the science wasthe most prominent code. For example,I just don’t think that the science is there yet … (NII008).(3) Benefits: Improved care was the code that emergedprominently under the theme of benefits. Emergentcodes also highlighted the importance ofpossibilities for a better understanding of mentalillness and de-stigmatization. For example,… Neuroimaging has] had an important contributionto kind of the sociology of how we think about mentalillness. (NII05).(4) Risks: Noise, claustrophobia, and radiation were therisks that emerged prominently in the data. Risks ofincidental findings, distrust of medicine, discrimination,and breaches of confidentiality were also coded.(5) Future of functional neuroimaging: The need forclinical trials was a dominant code in response toTable 2 Interviews with investigatorsCoded themes/Subthemes Number of interviews inwhich coded themes andsubthemes occur/total NCoded themes/Subthemes Number of interviews inwhich coded themes andsubthemes occur/total N(N = 28) (N = 28)Goals of research Risks to participantsTreatment choice 9 Noise, claustrophobia 11Prediction 7 Incidental findings 9Monitoring 5 False hope for treatment 8Treatment 4 Distrust of science or medicine 3Diagnosis 3 Inaccurate diagnosis 6Pre-surgical planning 3 Increased stigma 5Defining populations 1 Negative self-understanding 4Challenges Distrust of science or medicine 3Scientific challenges 12 Breach of confidentiality 2Funding challenges 8 Discrimination (e.g., insurance) 2Technical limitations 5 None (explicitly) 3Heterogeneous protocols 1 Future of neuroimagingParticipant recruitment 4 Clinical trials needed 16Ethics review itself 2 Clinical trials not needed 1Balancing research with care 2 Larger samples 13Obtaining informed consent 1 Multi site trials 12Lack of creativity in the field 2 Controlled studies 7Potential benefits Blinded trials 5Improved care 9 Randomized trials 5Better understanding illness 6 Longitudinal studies 2Reduced stigma 5 Add-on studies 2Improved self-attitude 1 Standardized imaging protocols 6New knowledge 2 Different models of disease 2None (explicitly) 2 Drug trials 2Clinical UptakeDemand from clinicians 1Science not ready 11Anderson et al. BMC Psychiatry 2013, 13:208 Page 5 of 11http://www.biomedcentral.com/1471-244X/13/208the question about the future of the science. Forexample,We have been tremendously, tremendously limited bysmall sample sizes, by particular oddities of particularpopulations or treatments, and lack of anunderstanding of what a placebo does, for example,relevant to a medication. Or even what a real clinicalchoice might be that a person—a provider with apatient might be faced in the clinic, and aligning thatwith how we do our research. So putting functionalneuroimaging with actual, properly done clinical trialshelps merge those sets of interests and challenges(NII008).(6) Clinical uptake: The immaturity of imaging sciencein the context of mental health and the consequentneed for caution with respect to clinical application,characterized the dominant response to thequestion about readiness of the technology for thepsychiatry clinic. For example,… imaging is not as strong for defining diseases as theDSM criteria are… it’s not as accurate as standardbehavioural interviews and scales for diagnosticclassification… I just think we’re not doing it becauseit’s not a responsible thing to do… (NII012).Service providersWe identified eleven eligible participants who satisfied theeligibility criteria for the study. Five participated. Theseparticipants saw their work in clinical terms, with four ofthe five providers stating that they were actively usingfunctional neuroimaging in their clinical practice. Oneprovider also noted involvement in clinical research.The major themes coded from this group were similar tothose emerging in the interviews with investigators (Table 3):(1) Goals: Treatment choice was the dominant code inthe discourse about goals. The use of functionalneuroimaging for diagnostic purposes was alsoprominent in the interviews.(2) Challenges: Limitations of symptom-baseddiagnostic categories was the most frequent codeconcerning the challenges associated with the useof neuroimaging in clinical psychiatry. For example,[W]hat’s going on in the country is that there’s a verysignificant limitation to the current diagnostic codingsystem. It’s really, to be completely plain about it,based on appearances, because really all we’ve had foryears is appearances. Now, I mean there are somediagnostic codes in there that having something to dowith genetics… [T]he bottom line is, human beings inthe office are labelled by how they behave, and by whatTable 3 Interviews with service providersCoded themes/Sub-themes Number of interviews inwhich coded themes andsubthemes occur/total NCoded themes/Sub-themes Number of interviews inwhich coded themes andsubthemes occur/ total N(N = 5) (N = 5)Goals of practice Potential benefitsTreatment choice 4 Improved care 4Treatment 2 Reduced stigma 3Diagnosis 3 Increased family support 1Compliance 1 Improved self-attitude 1Challenges Risks to patientsLack of creativity 1 False hope for treatment 2Professional censure 1 Cost 1Lack of clinician-researchers 1 Misuse of technology 2Limited clinical knowledge 1 Patient self-understanding 1Symptom-based diagnosis 2 Future of neuroimagingDistrust of the Academy 1 Clinical trials needed 1Limited training 1 Clinical trials not needed 1Lack of clinical interest 1 Controlled studies 1Insurance 1 Standardized imaging protocols 1Rationale for clinical useDemand from other clinicians 1Scientific promise 1Anderson et al. BMC Psychiatry 2013, 13:208 Page 6 of 11http://www.biomedcentral.com/1471-244X/13/208an external person thinks their behaviour is, as opposedto what’s actually necessarily going on. And so imaging’sa very important point. If you’re using—if you’re findingthat using the current diagnostic naming system to driveyour treatments is limited and insufficient, it’s going tobe natural to seek further information with more brainfunction evidence (NII026).Distrust and professional censure, limited trainingopportunities, lack of creativity in the field, and ashortage of medically-trained neuroimagingresearchers were also coded.(3) Benefits: Benefits related to the possibilities forimproved care and the destigmatization of mentalillness were the primary codes related to benefits inthe interviews of providers.(4) Risks: False hope and the misuse of technologywere the most prominent risk codes. For example,The risk of the test is misusing the test. The risk istelling—giving people false hope, which I—which Inever do. I think it’s very important to explain topatients as carefully as possible, like, what thebenefits, what the risk –, what I can do with theinformation, what I can’t do (NII032).(5) Future of neuroimaging: Coding highlighted anemphasis on guidelines and standardization but notnecessarily on clinical trials. For example,[W]hat do we need to make it more possible to haveimaging really a standard part of psychiatricmedicine? …we need standards that we don’t have.Standard ways to do the procedure, to interpret theprocedure, and a standard body of literature thateverybody can refer to (NII022).(6) Clinical uptake: When asked why functionalneuroimaging was limited clinically in the contextof mental illness, providers cited a number offactors including lack of interest. The followingquotation is illustrative:There’s not enough people who are doing it that areexcited about it. It’s not that it’s not useful. (NII022).ConsumersSeventy-seven individuals responded to the recruitment adsfor the consumer arm of the study. Most of these individualslearned about the study through posters in the offices, news-letters, or websites of service providers. The rest accessed in-formation about the study via our Google Ad or web-basedmental health fora. There were no respondents to theadvertisement on Craigslist. Of the seventy-seven individualswho responded initially, six were ineligible and forty-threedid not respond to follow up. Twenty-eight respondentsconstituted the final sample, yielding a response rate of 44%.All participants completed a demographic survey be-fore the interviews began. The majority of participantswere Caucasian (27 of 28), and one was African Ameri-can. A majority of the participants were female (17 of28) Almost sixty percent of the participants reported in-comes over $75K USD, and forty-three percent of re-spondents reported that they held a graduate degree.Seven major themes were coded from the interviewswith consumers (Table 4):(1) Sources of information about brain imaging: Popularmedia (i.e., Internet, television, popular books)emerged as the primary source of information.(2) Motivation: Coding highlighted consumers’ desirefor a clear and objective diagnosis as the primarymotivation for pursuing neuroimaging in the openmarketplace. For example,… I thought that with certainty, the kind of certaintyyou can get with a picture, maybe that would helpus… (C007).… brain imaging would get us a better assessment, amore complete assessment than the nonsense I wasgetting here (C024).Hope for better treatment and distrust oftraditional psychiatry also emerged prominently inthe coded interviews.(3) Concerns: Little in the data suggested concernsabout neuroimaging. The few coded units for thistheme related to radiation.(4) Results received: New diagnosis, confirmation of anexisting diagnosis, or a new secondary diagnosisdominated codes for results received. For example,[T]hey said I had kind of an ADD process where, youknow, when I’m concentrating, especially on, you know,something that’s relatively mundane, there’s a decreaseof function in the front part of my brain, so that itlends itself to having more difficulty with staying ontask with boring things (C014).(5–7) Impact, evaluation and experience: Consumersidentified many types of impact from theclinical consultation they received. Changes intreatment and physical or psychological reliefdominated the codes for this theme. Forexample,Anderson et al. BMC Psychiatry 2013, 13:208 Page 7 of 11http://www.biomedcentral.com/1471-244X/13/208I was relieved to know that it was not – that I wasn’tcrazy (C039).[T]his made me feel more in control of my own life.And that’s a really good feeling to have. That’sdefinitely worth thirty-five hundred dollars (C023).Better understanding of mental illness, improved self-attitude, a sense of empowerment, and increased hopewere also coded frequently. We coded a few instances ofnegative discourse regarding decreased hope, impededcompliance with treatment, and a worsened attitude to-ward the self.DiscussionTo map the current translational landscape of functionalneuroimaging for mental illness, we interviewedinvestigators who are conducting functional neuroimag-ing studies involving adults with mood disorders, anxietydisorders, or schizophrenia, providers who are applyingfunctional neuroimaging clinically in this population,and consumers of these services.We found six to seven major emergent themes in eachgroup, and among them convergence in perspectivesacross the three groups in some domains. Investigators,service providers, and consumers held common perspec-tives about the potential or actual risks and benefits offunctional neuroimaging for mental illness. All threegroups pointed to improved care as a major goal offunctional neuroimaging in this context and shared simi-lar goals for improved diagnosis, treatment choice, andcompliance. All three groups also discussed cost and ac-cess, the importance of mitigating false hope, and themeaningfulness of findings.Table 4 Interviews with consumersCoded themes/Subthemes Number of interviews inwhich coded themes andsubthemes occur/total NCoded themes/Subthemes Number of interviews inwhich coded themes andsubthemes occur/ total N(N = 28) (N = 28)Source of information Impact of scanPopular media 20 Change of treatment 18Professional sources 5 Better treatment 10Word of mouth 4 Relief or quality of life 18Motivation to seek scan Better understanding of disorder 14Objective diagnosis 23 Improved self-attitude 13Better understanding 14 Sense of empowerment 11Better treatment 11 Acceptance by others 11Skepticism - psychiatry 11 Increased hope 10Undiagnosed concerns 8 Belief in diagnosis 6No other options 5 Decreased stigma 5Legal reason 2 Decreased hope 4Concerns about the scan None (explicitly) 2Cost 13 Worse self-attitude 1Radiation 6 No change in treatment 1Meaningfulness 4 Decreased compliance 1Unexpected bad news 3 EvaluationLack of insurance 3 Expectations fully met 22Claustrophobia 2 Would do it again 22Uninformative findings 2 Worth the cost 8Confidentiality 1 Expectations partly met 5Change in therapy 1 Would not do it again 1Results received Overall experienceNew primary diagnosis 12 Positive 25Confirmation of existing diagnosis 11 Negative 3New secondary diagnosis 11Exclusion of a suspected diagnosis 2None (explicitly) 2Anderson et al. BMC Psychiatry 2013, 13:208 Page 8 of 11http://www.biomedcentral.com/1471-244X/13/208These convergences notwithstanding, the divergences inperspectives between participants in the three groups arestriking if not unexpected. When asked about the chal-lenges they face in their work, the concerns of investigatorsand service providers overlapped to a limited extent. Over-all, the persistence of symptoms based diagnostic categorieswas the challenge noted most frequently by service pro-viders, whereas the limitations of the science in this areawas the challenge noted most frequently by investigators.Consumers’ perspectives on their own experiences withbrain scans sit uneasily against the backdrop of these pro-fessional disagreements. Though some consumers did ex-press concerns about the validity or efficacy of functionalneuroimaging in this context, consumers’ evaluation ofthe service they received was positive: the majority statedtheir expectations were met. That said, only a subsetstated they would do it again or recommend it to othersgiven the $3500-4000 USD cost.In sum, the evidence paints a conflicted picture. Aca-demic investigators are skeptical about the clinical appli-cation of neuroimaging in the context of mental healthgiven the current state of the science. By contrast, com-mercial service providers are enthusiastic, based on theirclinical experience for the most part. Consumers, finally,are caught in the middle. All told, this scenario posesdangers to everyone: academic investigators risk missingthe opportunity to shape the uptake of this emergingtechnology in the marketplace; commercial service pro-viders, who already face significant resistance, risk abacklash from the academic community; and consumersthemselves may come to distrust both parties.Indeed, such open antagonism between the academicand commercial communities undermines trust in sci-ence and medicine and, ultimately, does a disservice tothe public. As Ellison writes in her recent book Buzz(2010), we are… drowning in data and confused by endlesscontroversies (p. 149).Professional disputes may be newsworthy but they areoften unproductive distractions as well.It is important to note the limitations of this study.The data reflect the perspectives of a closed and limitedset of investigators, providers, and consumers. The ser-vice provider pool is particularly small, and the use ofsnowball sampling to identify investigators and serviceproviders may have biased the results. Consumers whoself-selected to participate may have been particularlysatisfied with services received. The data are also limitedin terms of the overall ethnic and cultural diversity ofparticipants. Finally, some degree of coder bias is inevit-able when working with qualitative data, even in the faceof systematic analyses and consensus.Study limitations notwithstanding, these findings shedlight on the current translational landscape of functionalneuroimaging for mental illness. It is clear that much workneeds to be done to both minimize existing tensions andto maximize the potential of this exciting new technology.With these goals in mind, we draw upon the data to offerthe following recommendations for future action:Create a mental health neuroimaging consortiumWe recommend the creation of a consortium for func-tional neuroimaging in mental health, that builds on thestrengths of existing shared databases such as BRAINNet,OpenfMRI, BrainMap, meta-analytic methods such as theALE and ES-SDM, and others such as the Alzheimer's Dis-ease Neuroimaging Initiative (ADNI). Members of theconsortium would follow standardized protocols for dataacquisition, data analysis, and repositories for data miningand sharing. It should be co-funded by major governmenthealth agencies that have mental health at the focus oftheir mandate, and properly include a component dedi-cated to cultural representation. The consortium shouldfocus initially on biomarkers for treatment selection andmonitoring in a discrete number of disorders. Given ad-vances particularly in the area of schizophrenia [23], thiswould be a good first target. The consortium should part-ner with the pharmaceutical industry to conduct largeclinical trials akin to drug and cancer trials [25]. Theseshould be unencumbered and monitored by an independ-ent scientific board. The work should be conducted withinan open and transparent framework of collaboration thatdestigmatizes academy-industry research and mitigatessuspicion of bias.Conduct retrospective studies of extant databasesWe recommend retrospective studies of extant commer-cial image databases. The for-profit imaging sector boastsvast image databases but, to date, they remain an un-tapped resource. Studies of these databases could be madepossible via open competition for research contracts andpaid for in part by the commercial sector and carried outin partnership with academia. These studies would needto undergo continuous review by a scientific advisoryboard that has equal membership from both sectors.Rigorous methods and effective dissemination strategiesanchored in pre-engagement ethics agreements should becentral requirements of potential proposals.Build on commercial reach and know-howThe academic neuroimaging community, academic insti-tutions, research sponsors, and others should harnessthe know-how and reach of the commercial marketingmachine to raise awareness and improve education ofmental health disorders. The visibility of the commercialsector is indisputable. With careful management, thereAnderson et al. BMC Psychiatry 2013, 13:208 Page 9 of 11http://www.biomedcentral.com/1471-244X/13/208is an opportunity to better promote mental health andwell-being using these methods.ConclusionOur findings point toward a fundamental tension be-tween academic investigators on the one hand, and com-mercial service providers and their customers on theother. This scenario poses dangers to the communitiesdirectly involved, and to public trust in science andmedicine more generally. Much work needs to be doneto mitigate these dangers and maximize the potential ofexciting new technology. With a focus on the patientand the collective strengths of both the research and ser-vice provider communities, constructive steps can besuccessfully undertaken to achieve these parallel goals.Competing interestsThe authors declare that they have no competing interests.Authors’ contributionsJA, AM, and JI designed the study. JA conducted the interviews. JA and AMcoded the data. JA, AM, and JI analyzed the results. JA wrote the first draft ofthe paper. JI reviewed the draft. JA, AM, and JI approved the final draft ofthe paper. All authors read and approved the final manuscript.AcknowledgementsThis work was supported by NIH/NIMH 9R01MH84282-05 (J. Illes) and furtherenabled by CIHR CNE #85117, BCKDF, CFI. Judy Illes is the Canada ResearchChair in Neuroethics. 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Corbin JM: Basics of qualitative research: techniques and procedures fordeveloping grounded theory. 3rd edition. Los Angeles, Calif: SagePublications; 2008.41. Thorne S, Kirkham SR, Columbia B, Flynn-magee KO: The analytic challengein interpretive description. Int J Qual Methods 2004, 3(1):1–11.doi:10.1186/1471-244X-13-208Cite this article as: Anderson et al.: Triangulating perspectives onfunctional neuroimaging for disorders of mental health. BMC Psychiatry2013 13:208.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/submitAnderson et al. BMC Psychiatry 2013, 13:208 Page 11 of 11http://www.biomedcentral.com/1471-244X/13/208


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