No suitable Danish questionnaire exists to evaluate patient satisfaction with various patient reported outcome measures. Thus, the aim of this research project was to conduct a study on the translation and cultural adaption of an American patient reported experience measures questionnaire, “Patient Feedback Form”, among Danish patients, and to examine selected psychometric properties within reliability.In the first phase of the study, the Patient Feedback Form was forward and backward translated following the methodology of existing guidelines. Subsequently, cognitive interviewing was performed with seven cancer patients and seven healthy persons (19–86 years old/6 men and 8 women) to ensure that questions were easy to understand and made sense to Danish interviewees.In the second phase, phone interviews were carried out with 95 prostate cancer patients after they had responded to the same Patient Feedback Form. Missing data was imputed using the Expectation-Maximization technique. To examine the structure of the questionnaire, an exploratory factor analysis was conducted. Cronbach’s alpha was calculated to investigate internal consistency.There were only minor disagreements in the translation process, and the reconciliation went smoothly (phase 1). With regard to one item, however, it was difficult to reach a consensus. Through the qualitative validation process, the right solution was found. The results from the psychometric testing (phase 2) showed that four factors had an Eigen value > 1, but only one factor was extracted as the Scree plot had a clear “elbow”, showing a one factor structure that explained 46.1% of the variance. The internal consistency was high as Cronbach’s alpha was 0.89.The translated, culturally adapted, and validated version of the Patient Feedback Form seems to be suitable for measuring satisfaction with patient reported outcome measures in a Danish setting. While the results should be treated with caution due to the small sample size, psychometric testing indicates that the questionnaire is a valid instrument. However, additional psychometric testing such as hypotheses testing, responsiveness, and test-retest on a larger and more diverse sample size is required to further verify the validity of the instrument. Several questionnaires to measure patient reported outcome measures (PROMs) exist and have become an increasingly popular source for collecting information on patient conditions, e.g. physical symptoms, toxicities, or psychosocial problems . Some inSince no suitable PREM-questionnaire was available in Danish, an American questionnaire entitled “Patient Feedback Form” was chosen , 5, 11. Firstly, the aim of this study was to translate and culturally adapt the questionnaire into Danish following existing guidelines , 14 and,An expert group was formed to oversee the translation process. The group consisted of a senior oncologist  and a sePermission to translate the Patient Feedback Form was granted from the developer, Ethan Basch , and ClaThe Patient Feedback Form was translated into Danish by two independent, experienced translators, who had Danish as their mother tongue, were fluent in English , and hadComparisons were made between the independent translations regarding ambiguity and discrepancies of words, sentences, or meaning for each item in the questionnaire in order to create a consensus version.The Danish consensus version was back-translated by two independent bilingual translators blind to the original. The translators had English as their mother tongue but had resided in Denmark for several years. As with the forward translations, the translators were asked to take a conceptual approach due to the subjective nature of the construct (patient experience and satisfaction) .The two translations were then compared to the original to ensure that the translated versions reflected the same item content.. A combination of the “think aloud” method and “probing” was applied [Cognitive interviewing was performed with 7 cancer patients receiving immunotherapy for malignant melanoma and 7 healthy persons (19–86 years/6 men and 8 women). The respondents were selected to ensure an equal distribution across age and gender applied  to ensur applied .There are no general criteria for calculating sample size when assessing internal consistency and factor analysis. The Cosmin guideline, however, contains standards for evaluating the methodological quality of studies on measurement properties . AccordiIn the original version, the Patient Feedback Form was used in connection with cancer patients , 5, 11, p < 0.05) [p > 0.05) MCAR test, the Expectation-Maximization (EM) technique was used to impute data [The structure (i.e. the number of factors) of the Patient Feedback Form was unknown, and it was not possible to make a confirmatory factor analysis because no psychometric testing of the original version had been carried out. Thus, the psychometric evaluation comprised of an exploratory factor analysis (EFA) if the Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy was > 0.6 and if the Bartlett’s test of sphericity was significant ( < 0.05) . The num < 0.05) . Further < 0.05) . Missing < 0.05) . If partute data . A signiOverall, consensus was easy to achieve and neither the translators nor the experts felt that they had to compromise. As for the forward translation, minor discrepancies such as the use of synonyms – digital vs. electronic – and different word order were detected. One of the translators, for example, suggested, “Completing the questionnaire improved discussions with my doctor” whereas the other suggested, “Discussions with my doctor were improved because I had completed the questionnaire.” Also, the back-translated versions were close to the original. In the original version, the word “completed” was used for filling out the questionnaire whereas the two backward translators had chosen “answer” and “respond to”. However, it was not possible to reach a consensus on whether or not the English loanword “feedback” should be translated into Danish. The expert group decided to leave it up to the pilot testing, resulting in the word being translated into a Danish word. Also, the respondents found two items . The missing data was replaced by the EM method. The EFA was conducted as the KMO was 0.731 and Bartlett’s test significant (p < 0.001). Four factors had an Eigen value > 1, but only one factor was extracted as the Scree plot had a clear “elbow”, showing one factor explaining 46.1% of the variance. Three items had a factor load < 0.4,  were not able to answer all 13 items since they had not been in contact with a healthcare professional; five of the items  in the final Danish version.In the forward translation, both translators had chosen not to translate the English word “feedback” in the title. The word is a loanword in Danish and the translators believed that the word was so integrated into the Danish language that everyone would understand the meaning. The respondents disagreed on whether or not it was appropriate in the Danish version since there was a risk that older patients in particular would not understand it. Consequently, we decided to choose the Danish word “tilbagemelding” – the best possible translation of feedback – which was also suggested by some of the respondents. Concerning items 7 and 10, which were found to be similar, it might be argued that future respondents may find it annoying that two items are almost identical. However, there are some nuances. The word “discussions” may, for example, be more of an active exchange of opinions between patient and physician whereas “communication” may also be one-sided with the physician setting the agenda. Moreover, the importance of staying true to the original was prioritized. An inter-item correlation of 0.728 supports the argument that, despite the similarity, the items are not redundant. As for the phrase “control of”, which the Danish respondents disapproved of, we decided that cultural adaption was more important than sticking to the original phrase. Due to cultural differences, it may be more natural for American patients to feel in control of treatment and care , whereasFar from all patient satisfaction questionnaires have undergone psychometric testing , which iIt is a limitation that data had to be imputed to complete the dataset. In future research, a study sample where the respondents are able to answer all the items, including the ones dealing with contact between patient and health care professional (items 6–10), should be considered. Also, the generalizability of the results may be reduced by the fact that all the respondents were male, prostate cancer patients and limited to those between the ages of 54–73. Furthermore, it has to be taken into consideration that even though the sample size is accurate to test the EFA, a larger sample size is preferable.Psychometric testing is often left out when a questionnaire is being used, and the fact that some initial testing has been performed is an obvious strength. Furthermore, the questionnaire may be a valuable tool to assess whether or not a given PROM-questionnaire should be implemented in the clinic or to assist clinicians in choosing which questionnaire to use in a given context. There is a need to “capture patient’s experience of treatment and care as a major indicator of health service quality and treatment effectiveness” . Using tThe translated, culturally adapted, and validated Danish version of the Patient Feedback Form seems to be suitable for measuring satisfaction with PROMs in this prostate cancer population. To further verify the validity of the instrument, the next step should be psychometric testing such as hypotheses testing, responsiveness, and test-retest on a larger and more diverse sample size.


Across many jurisdictions, adults with complex mental health and social needs face challenges accessing appropriate supports due to system fragmentation and strict eligibility criteria of existing services. To support this underserviced population, Toronto’s local health authority launched two novel community mental health models in 2014, inspired by Flexible Assertive Community Team principles. This study explores service user and provider perspectives on the acceptability of these services, and lessons learned during early implementation.We purposively sampled 49 stakeholders  and conducted 17 semi-structured qualitative interviews and 5 focus groups between October 23, 2014 and March 2, 2015, exploring stakeholder perspectives on the newly launched team based models, as well as activities and strategies employed to support early implementation. Interviews and focus groups were audio recorded, transcribed verbatim and analyzed using thematic analysis.Findings revealed wide-ranging endorsement for the two team-based models’ success in engaging the target population of adults with complex service needs. Implementation strengths included the broad recognition of existing service gaps, the use of interdisciplinary teams and experienced service providers, broad partnerships and collaboration among various service sectors, training and team building activities. Emerging challenges included lack of complementary support services such as suitable housing, organizational contexts reluctant to embrace change and risk associated with complexity, as well as limited service provider and organizational capacity to deliver evidence-based interventions.Findings identified implementation drivers at the practitioner, program, and system levels, specific to the implementation of community mental health interventions for adults with complex health and social needs. These can inform future efforts to address the health and support needs of this vulnerable population.The online version of this article (10.1186/s12888-018-1597-y) contains supplementary material, which is available to authorized users. Across jurisdictions, individuals with complex health, mental health and social needs face multiple barriers to accessing appropriate, integrated services and supports due to system fragmentation, strict eligibility criteria of existing services, stigma and discrimination.In western countries, individuals with serious mental illness (SMI) can access Assertive Community Treatment (ACT) or Intensive Case Management (ICM) services. Both ACT and ICM models have been studied in a wide range of contexts and for various subpopulations of adults with SMI –6. ACT iTo address some of these challenges, Flexible Assertive Community Treatment (FACT), a model that blends aspects of ACT and ICM services within a single team, emerged in the Netherlands in the past 10- years, and has been well described and adopted elsewhere –14. WithThis study describes the early implementation of two local community mental health teams, inspired by FACT principles, to address the needs of adults with complex health, mental health and social needs in Toronto, Canada’s largest urban centre. The local service delivery context, and guidelines from the local health authority necessitated departures from full replication of FACT.Assertive Community Treatment (ACT) teams in the province of Ontario, Canada have been systematically implemented since 1998, with 79 ACT teams currently in operation . Though To address these challenges, Toronto’s local health authority launched two “Integrated Service (IS) Teams”, drawing from elements of FACT, in 2014. Although previous reviews have synthesized the factors that affect implementation of programs in general into a conceptual model , 24, andThis study aims to explore service user and provider perspectives on the acceptability of the IS team models, and to identify early implementation drivers. This information may be useful for future efforts to address the needs of adults with complex health, mental health and social needs in other jurisdictions facing similar challenges.Both Integrated Service (IS) teams, referred to throughout this paper as the “East” and “South” team, for their respective geographical areas in the city, were multidisciplinary, recovery oriented, and targeted individuals with complex needs Table . EligibiThe East team, aiming to integrate hospital with community based expertise and resources, was implemented by adapting a pre-existing urban academic hospital ACT team serving a large homeless population . Co-locaBoth IS teams accept referrals for adults aged 18-65 years  with a variety of health and social needs, including challenges in performing activities of daily living and functioning in the community, housing needs, criminal justice involvement, substance use, and acute or chronic medical illness, including developmental disabilities. The majority of early referrals to the East team were 25-54 years of age (74%), male (57%), had a history of violence/aggression (66%) and a substance use disorder (52%). Approximately 48% had no fixed address. Similarly, the majority of referrals to the South team were 25-54 years of age (73%), male (62%), with a history of self-harm/suicide attempts and psychotic disorders (56%). Approximately 17% had no fixed address.The evaluation included review of program documents , and qualitative data collection with a total of 49 stakeholders. We conducted two staff focus groups, three service user focus groups, and seventeen key informant interviews with program and system-level stakeholders. Data collection took place between October 23, 2014 and March 2, 2015.n = 25) perceptions of the new team based models and the early implementation process, including key program components and staff perspectives on what worked well and what were the challenges during early implementation  ACT teams have shied away from people that are homeless or have had criminal justice involvement, or developmental disabilities” (KI 16). This service user, in describing his situation, summarized the challenges facing many individuals prior to their referral to an IS team:“My health was poor. I was sleeping on the street a lot. I was going through starvation periods, where I had no food…I was getting in trouble with the law, assaulting people… hearing voices and seeing things.”Recognition of the service gaps for this vulnerable population led to dedicated funding and incentives for provider organizations to work across services and sectors, helping launch new partnerships and collaborations: “I think we have to keep pushing our entire care system, to the point where we can really work together on [more] teams that cross organizations” (KI 15).As several study participants identified, the complex challenges in service users’ lives have deep, structural roots that community mental health services cannot address alone. Stakeholders recognized the limitations inherent in challenging the broader factors related to the social determinants of health: “Things like housing, things like a safe neighbourhood, access to quality food – there’s a lot of food insecurity…We’re dealing with issues of poverty…we’re operating within a context of a macro system that doesn’t promote recovery.” Key informant participants further reflected on the implications of this context:My anxieties were, you know, we are going to be only one team in a fairly hard-to-serve environment…I think there are a lot of systemic problems, that, you know, exist here ... it’s good to have one flexible piece, but I think all pieces need to become flexible. (KI 1).Team members identified the need for additional flexible resources in the community and systemic change, such as integrated primary care services, direct access to housing and rent supplements for those experiencing homelessness, or interim housing options for those referred upon exit from the criminal justice system.The organizations involved in IS team implementation had prior experience in serving adults with complex health and social needs, in service innovation and inter-sectoral partnerships, and were among few providers interested in exploring new approaches to service provision for this population. Stakeholders and managers at the organizational level were optimistic about the IS teams’ potential for influencing systemic change, and were keen to evaluate their implementation and outcomes: “I do believe that we need more of this type of interventions … than just more case management.” (KI 4).As implementation progressed, both teams encountered the need for process and practice improvements. Early on, the South team enlisted an external program consultant to engage staff in the development of team processes and protocols. Staff team members appreciated the opportunity to give feedback:[The program consultant] would then be able to make those adjustments on whether – be it charts of how things would flow through, or whose role was going to be what, or what our care plan was going to look like, or our referral forms… he was able to kind of put that in place.An East team key informant, similarly noted:If we’re successful or learn from the process and the system, we can influence the system … we would have, then, a community partner and a hospital who have gained knowledge about how that [hospital community integration] works and could replicate. (KI 5).The East team transformed a pre-existing hospital based ACT team to develop a flexible approach to service delivery in partnership with a community agency, bringing together hospital and community expertise and resources. In doing so, they encountered challenges and tensions in integrating divergent operational and human resource policies between the partner organizations, including reporting structures, and staff compensation. A key informant reflected, “I think we needed to talk about it from the beginning, I think, and do more things in partnership” (KI 2). Stakeholders also discussed the need to offer adequate time and support for frontline staff during transitions of such scale. Summarizing the views of many frontline providers, one East team staff member said, “Things went so quickly and nobody slowed down … it was so top-down and nobody came to talk to us.”Another key informant noted the benefits of having staff with a mix of clinical expertise and community knowledge in the hospital led East team:We brought case managers [from a community mental health organization] who have a really good knowledge of the community, and they bring a different perspective to client care…I’m seeing a really nice blend, because [these case managers] are learning something about the medical model, which is important because our clients do have a lot of medical co-morbidities. (KI 14).Introducing a flexible, recovery-focused model for individuals with complex mental health needs required large shifts in perspective and service delivery by frontline providers, who were hesitant to embrace new practice requirements. One key informant from the East team (KI 7) noted a gradual “culture shift happening, but I don’t think we’re all the way there.” Some frontline staff members had difficulty adapting to the changes, and this contributed to high staff turnover in the East team during the early phases of implementation.The IS team’s eligibility criteria enabled many service users to access care that has previously been denied to them. In the words of a service user: “I’ve been in the healthcare and mental healthcare system for many years…I just was continually falling through the cracks. [The IS team] was instant in getting me connected.” Staff felt that the new teams allowed for the possibility of “fitting the model to the patient” rather than “fitting the patient to the model”, thus reducing barriers to access and allowing for more timely and appropriate care. The teams aimed to work with adults who had, “not necessarily the diagnosis, but just [the] presentation” (KI 12). One provider stated:I think as time passes we’re looking less and less about you’ve got to meet A, B, C, D criteria... It’s more, “Okay, you’re very difficult to serve. Nobody else has been able to provide the services that you need. Maybe you ‘re appropriate for an IS team.The ability to titrate the level of support over time was seen as necessary and valuable: “Not everyone needs that [ACT team] level of intensity, but at some point, most people do” (KI 4). A stakeholder with the East team described the potential for movement within the team, while noting this movement was still in its early stages:We now have to start to see the flow and the movement on the other end… They are, you know, ACT clients we’ve seen every day, sometimes multiple times a day…and then, hopefully, they experience that period of stability. They move over to ICM case management. They are seen once a week …and now, you know, we are actively looking at the discharge planning for people and we’re moving them through that program and that system. (KI 3).Particularly in the initial stages of implementation, the exclusive focus on adults with complex needs resulted in a caseload with a large number of service users requiring high-intensity services. Staff suggested that “one client from the IS team would probably be equivalent to maybe three on an ACT team, in terms of management”. Some staff felt this workload was not conducive to the recovery-focused service they wanted to provide:We are supposed to be challenging discrimination in a recovery model but oftentimes what happens is that we just don’t have the time to do that, so we just move on.As another staff member described, “you are running around with your little garden hose trying to put out a forest fire.” A key informant with the East team said, “I would have hoped to have a true FACT team, where… you have a mix of, you know, high needs, moderate needs, and low needs.” Instead, this person felt the model, at least in its early stage, was more of a “super-ACT team… many too-complex clients, which makes it difficult for staff” (KI 16). Similarly, South team members explained the challenges with their case management approach: “Speaking on behalf of the nurses, we have other responsibilities for all the clients, not just our own caseload”; and, “I may have an entire caseload of people who require med observes, whereas somebody else doesn’t have any” (KI 11). Despite having access to other ICM and ACT services within the organization, staff and stakeholders of this team recommended moving towards a “more ACT-like model”, with more shared caseloads, similar to the East team, to distribute the work more equitably and facilitate recovery focused and evidence based care.Both teams invested in relationship building and regular communication with key hospital and community organizations to ensure input, transparency and accountability. The hospital led East team described “a couple of meetings with all service organizations” in the geographical area, where the team would report on, “Here’s where we are, here’s the draft [eligibility] criteria at this point” (KI 7). This ensured that the program adaptations would address local service gaps, as well as “build positive relationships for the referral process” (KI 14). Likewise, community organization led South team staff described “working really diligently at making these connections”. As a result, “they see us as being a really clean sort of resource and referral point” (South team staff). Stakeholders also noted that with more community outreach, working collaboratively with other agencies, the easier it would be for the teams to coordinate care for those receiving services from multiple agencies. One key informant emphasized that creating collaborative service user care plans with other agencies “provides an opportunity to engage with a range of other healthcare providers … which then helps to create a culture spread around coordinated care planning to primary care, to community mental health, etc.” (KI7).Often, the complexity of service user needs exceeded the IS team’s or host community organization’s expertise and resources. Both teams quickly recognized that management of medical conditions was particularly important for this population, facilitated in the East team by colocation with primary care services. Furthermore, service users frequently required acute psychiatric and medical care. Accessing hospital care and creating appropriate discharge plans could be challenging, especially for the South team, where the local hospital was not a direct partner in service delivery. One South team staff member summarized, “It’s hard as a community team who services this clientele with these complexities to not have any type of say or privileges for admitting in, in hospitals.” As one key informant explained, “What you don’t want happening, and what happens sometimes is, ‘We’re going to discharge Tom on Thursday.’ On Friday you get a call – ‘Oh, well, actually we discharged him on Wednesday’” (KI 15). The South team saw opportunities for better communication when service users required hospitalization:It would be really interesting to have a community person in the hospital that would kind of filter and control the information within the hospital system. Somebody consistent we could actually go to, to provide the information and feedback to. Almost like a back door. (South team staff).Training on evidence-based practices such as Motivational Interviewing was provided to team members prior to service launch. This was perceived as helpful not only for supporting service users, but for building team cohesion. Speaking of their experience with full-team, intensive training on Dialectical Behavioural Therapy (DBT), a South team staff member noted,I think it might contribute to the functioning of the team, because every single week we’re reminded to be thinking dialectically. We are reminded to be working in this kind of approach…and so, I can’t help but think that is influencing how we don’t just engage with our clients, but how engage with ourselves.Participants from both teams noted the need for ongoing training and supervision to ensure consistent delivery of evidence-based practices. As one key informant said,I think we do need, as a team, to get much more training in terms of how do we support clients in their recovery. I mean, I think theoretically we all know it, but I’m not so sure that we know it that much – how does it really play out in real life? How do we actually do that? (KI 14).Stakeholders identified that training for all staff may be difficult to provide when simultaneously caring for an active caseload, but stressed the importance of building in time and resources for individual and team training and supervision, facilitated in the East team by team based psychiatrists and a clinical psychologist.Our findings suggest that it is possible to increase diagnostic and service flexibility of community mental health teams in response to service access barriers for individuals with complex health and social needs. In Toronto, Canada’s largest urban centre, the implementation of novel approaches to serving this population was facilitated by recognition of the need for program adaptations and improvements to address existing service gaps, of the need for effective change management, as well as commitment and capacity to deliver flexible, multidisciplinary approaches to care. Although participating organizations were early champions of the need for improvement, our findings exposed significant provider, team and organizational challenges that need to be overcome in transformational efforts of this magnitude.Community and political contexts can have large impacts on the implementation of health services –36: our The design and philosophies of the teams, and the importance placed by staff and stakeholders on the flexibility and adaptability of the models, as well as the competencies of frontline providers to deliver evidence based interventions echo findings from research on successful implementation of health care practices, including Assertive Community Treatment , 34, 35.Dedicating time and resources to these aspects of implementation may also improve staff capacity and comfort with delivering care to adults with complex needs, potentially preventing turnover and encouraging a work climate more open to change and innovation, mitigating the risk of burn out and emotional exhaustion that might result from inadequate training or resources . OrganizDespite the use of rigorous qualitative methods, this research is limited in its generalizability due to the local service context in Toronto, Canada. Additionally, this study was completed during the early phase of program implementation, suggesting that examination of later phases of implementation and sustainability may be warranted, including purposive sampling of service user participants to increase trustworthiness of the data. In these early phases of program implementation, service user participation was limited to a convenience sample, introducing selection bias for this stakeholder group, and participant check in was not pursued with service user participants, given the focus of the study at this stage. Despite the limitations above, and the limitations of qualitative research in general, including researcher subjectivity in analysis and interpretation of data, our findings are relevant to many jurisdictions facing similar challenges, and may be helpful in efforts to innovate within existing community mental health models.Stakeholders with a range of expertise and experiences offer important perspectives on the acceptability and implementation drivers of flexible models of service delivery for adults with complex health and social needs. Lessons learned can guide continued improvement in community mental health services and call for rigorous research to establish the effectiveness of novel interventions.Additional file 1:Appendix X_Guide_Staff Focus Group Discussion Guide. (DOC 48 kb)Additional file 2:Appendix Y_Guide_Client Focus Group Discussion Guide. (DOC 49 kb)Additional file 3:Appendix W_Guide_Key Informant Interview Guide. (DOC 47 kb)


Medicine has evolved in two opposite directions. Evidence-based medicine focuses more on laboratory and computer data than on the patient. Yet experimental data also provide growing evidence for the importance of the patient’s social-psychological “demand” side of medicine, to complement the doctor’s bio-cognitive “supply” side. The patient’s mindset has major diagnostic and therapeutic effects. The patient’s experience is shaped by perceptions of four dimensions: meaning, agency, self-image, and temporal focus. The patient’s perceptions are linked in part to the therapeutic context, through the interaction between doctor and patient. In that proximal setting, the dimensions can be reshaped, for better and worse. These dynamics point to the inherently interactional nature of medicine and to the significant role of medical social sciences in the therapeutic context. In a 2016 essay on the changed nature of their work, two prominent physicians reflected on the modern practice of medicine. Most of their work and medical attention (estimated to be well over 50%) focused on the computer, the chart, the phone, and other staff, away from the lives, bodies, and identities of their patients.(p128) Paradoxically, the reduction in patient interaction occurs at the very same time that twenty-first-century medicine also newly reveals the important diagnostic and therapeutic roles of the physician–patient interaction, in a way that was not evident before.The physician’s distancing from the patient does not reflect individual preferences. It results from the objective, structural tensions confronting every physician, which are inherent in evidence-based medicine and the biophysical model of disease. Vast scientific advances generate massive laboratory results and Big Data, yielding complex cognitive puzzles to be cracked by the computer and algorithms. In addition, every individual case is limited in time and resources. As a result, the focus of medicine has become increasingly narrow, concentrating on “repair of health, not sustenance of the soul.”3(p3)Medical thinkers have underscored the limits of the scientific focus in medicine. Groopman, then the Chief of Experimental Medicine at Beth Israel Deaconness Medical Center, reflected on his earlier medical training. In a book chapter entitled “Unprepared,” he described how helpless he felt in dealing with a patient because his education had not prepared him for matters of the heart: “I mistook information for insight. While I was well prepared for the science, I was pitifully unprepared for the soul.” Groopman’s education reflected the general approach: “Although lip service was paid to the patient’s emotional state, it was largely ignored.” Young doctors did not discuss “the psyche and the soul” but saw their future “in hard science.”3As the distance between physician and patient has grown, so has the empirical evidence for the inherently relational nature of medicine, for diagnostic and therapeutic purposes. The interaction between doctor and patient, like the interaction between body and mind, is increasingly recognized as an inextricable process and as a central component of therapeutic intervention. The patient’s mindset moved from the sidelines, in need of supportive care, to become an integral part of the medical process. The approach is not a throwback to an earlier ethos of caring “bedside” manners by a nurturing house doctor; it is a significant scientific advance that elucidates the instrumental role of psycho-social variables. The mind has moved from being seen as noise and error in the system, into being considered an essential component of the medical process with significant impact and importance.The role of intuitive cognitive and psycho-social variables in intervention has already produced paradigm shifts in other fields, including economics. The science of decision-making and behavior in many disciplines has been transformed by the seminal work of two Israeli psychologists, Kahneman and Tversky.The impact of the psychological work was transformative in economics, leading to the rise of “behavioral economics.” Tversky and Kahneman’s work, and related advances, was recognized by the 2002 Nobel Prize in Economics. Economists noted that since the intuitive mental rules reliably produced predictable outcomes, they could become valuable assets for designing public policies, and provide effective leverage for change. Thaler and Sunstein, prominent economist and legal scholar, respectively, described a “choice architecture” approach that engages the intuitive dynamics for systematic change. Many nations already incorporate the insights into the institutional design of policy. Sunstein noted that psychological research had helped inform initiatives in finance, highway safety, consumer protection, energy, climate change, obesity, poverty, crime, and many other areas. The law professor and former government official urged the creation of a national council of psychological advisers, on the model of the councils of economic advisers in place in many nations.9Medical thinkers also considered the role of mind in medicine. Their work focused primarily on doctors’ cognitive mindsets. They described potential pitfalls in medical decision-making for doctors and patients, and ways to optimize decisions.13This paper considers several additional psycho-social dimensions, centered on the patient’s subjective experience and on the relation with the physician. Work in psychology suggests that the features of the patient’s subjective experience also play a significant role in medical care and in therapeutic outcomes. The paper argues for enlarging consideration of the relational context of medical practice, and of the effects of psycho-social variables on biomedical developments. Attention to the patient’s subjective experience complements the focus on the doctors’ cognitive mindset and decision-making dynamics. This perspective combines a focus on the supply side of medical practice  with a focus on the patient’s human “demand side” of the relationship. Both sides are an integral part of the inherently relational nature of medicine.14The paper explores four core variables that arise in part from the doctor–patient relationship: meaning, purpose; agency and personal control; autonomy and self-image; and temporal focus. The research findings have often developed within psychology,22The reactions and resources in coping with illness are typically conceptualized as a form of response to trauma. The clinical analyses usually include few detailed accounts by victims of trauma. There is, however, a field of trauma with ample reflections of individuals, distilling the core of their experience from close up. The literature by and on Holocaust survivors provides insightful accounts with striking parallels and convergence with the empirical findings of traditional illness and trauma research. The extremity of the Holocaust experience does not entail a clinical exceptionalism in processes of resilience. Rather, the extremity serves as a magnifying glass of sorts, bringing the processes in sharp relief. Such accounts complement the clinical research picture and underscore the convergence in processes. Indeed, there has been a lively two-way traffic between the Holocaust and psychological literatures: psychiatrists have developed entire theories of resilience and coping based on their own and others’ Holocaust experiences,27The role of psycho-social variables in the evolution of illness, and the relational nature of medicine, comes into relief in the dynamics of the doctor–patient relationship. Psychoanalysis and related therapeutic interventions in mental health early recognized the centrality of the clinical relationship in the process, as a potential liability, to be turned into a powerful leverage. According to Freud, the charged relationship, in which the patient predictably develops negative and erotic feelings to the analyst, was one of the chief expressions of the patient’s resistance to the treatment and the main obstacle to therapeutic progression. The analytic process was “the battlefield of transference.” The analyst strove to defeat the neurotic impulses by entering an alliance with the patient. In this way transference turned from “the most powerful resistance to treatment” into its “main instrument.”The idea of an instrumental therapeutic alliance between physician and patient developed across the mental health fields, even in approaches  far removed from psychoanalysis. Previously, therapeutic effects were attributed to various technical modalities, with the quality of the relational bond between patient and therapist treated as an added value. Recent research and meta-analyses indicate that the quality of the relationship itself is in fact an integral component of the process, and a robust predictor of outcomes, across a wide range of diagnoses and treatments.30Canterbury Tales, Placebo is, in one tale, a dishonorable, flattering character who causes significant harm. In another tale, flatterers are called the devil’s chaplains, always singing placebo.L’Elisir d’Amore features the traveling quack doctor Dulcamara, a “doctor sans pareil,” who takes advantage of the credulity of the villagers. His potion, he promises, will cure old age, banish wrinkles, move the paralytics, cure the apoplectics, asthmatics, diabetics, and most other maladies.The growing recognition of the importance of the psycho-social context has also become evident in the evolving perspective on the placebo effect. The placebo has a long and distinguished history as a negative, morally reprehensible sham intervention, associated with deception. In Chaucer’s fourteenth-century In medicine, like in literature and opera, the placebo was long considered a harmless substance (sugar pills) or intervention that aimed to appease or “please” (“placebo” in Latin) patients by fostering an illusion of treatment when no intervention was available or called for. A focus on the bio-physical features of disease made the negative placebo conception self-evident. Since the placebo was an inert substance or treatment, it could not possibly have a therapeutic effect, by definition.34The importance of the psycho-social context in clinical care has been shown, for instance, in the so-called “open–hidden” paradigm. In the “open” condition, like in standard care, the clinician openly administers the drug or treatment and interacts with the patient. In the “hidden” condition, the treatment is administered without the patient’s awareness, and in the absence of the usual clinical social context. Studies have shown that the hidden administration of five common painkillers is significantly less effective than their open administration, and similar effects have been shown for other conditions.39A fundamental aspect of human experience involves a fear of randomness, unpredictability, and loss of control. People are particularly apprehensive about personal or public hazards  that are ill-defined, undetectable, or that can strike at any moment. Threats of disease or terrorism often evoke distress (as the term “terror” suggests) out of proportion to the objective risks and consequences.43post hoc confabulations for ill-understood experiences the interpreter.Stories, or narratives, are one intuitive way to connect the dots, and generate causality. Narratives serve children and parents alike to make sense of the world and construct meaning. Neuroscientists have demonstrated the human narrative tendency in split-brain patients. In such conditions, the left hemisphere and language center do not have access to information that is presented to the right brain. In a series of studies, researchers showed, for instance, a scary fire video to a patient’s right hemisphere, triggering an emotional response of fear and anguish. When asked to explain her reaction, the patient’s left hemisphere speech center (unaware of the scary scene) improvised an explanation, saying that the experimenter was somehow scary. The experimenters also flashed the picture of a pin-up girl to the right hemisphere of a patient, who started laughing. When asked to explain her emotion, she said there was a funny machine in the room. The researchers called the left-hemisphere process that created Medical anthropologists distinguish between disease and illness. Disease is the objective biomedical condition that the physician fits into a technical nomenclature and taxonomy to create a diagnostic entity. Illness refers to the subjective, lived experience of symptoms and suffering, to the patient’s understandings and expectancies, and to the socio-cultural meanings associated with the disease. The uncertainty, injustice, and suffering of illness are given coherence in “illness narratives” developed by patients and society.must be at fault. After 35 painful chapters of Job’s friends blaming the victim, God Himself can take it no more. He first appears to Job to proclaim again Job’s righteousness, without, however, offering an explanation for Job’s immense sufferings. God merely reaffirms the inherent limits of human understanding. He then turns to Job’s friends, the unknowing “interpreters.” God rebukes them for offering the standard spurious moralistic “consolations” for illness.The Book of Job opens, in its very first verse, with God’s categorical affirmation that Job was blameless and upright. The chapter then proceeds to describe how Job, in a breathtaking sequence, loses his material possessions, his children, and then is struck with body-wide loathsome sores. Upon hearing of his great suffering, Job’s friends immediately converge to “console and comfort him.” Each in his own way explains Job’s suffering in terms of a “moral causal” model for misfortune. Surely, they suggest, Job’s suffering was connected to some known or unknown transgressions; in some way, the sufferer Job’s friends were hardly alone in evoking a moral explanatory model for misfortune. Anthropologists have identified several kinds of explanations of suffering that are prevalent, in local idiom, in most societies: interpersonal, moral, and biomedical modes of causal explanation. The moral mode of explanation, in particular, sees suffering as linked to the victim’s own actions or intentions, sinful thoughts, and acts of commission or omission.47The four aspects of the subjective experience of illness considered in the paper are core elements in patients’ explanatory models. The elements are shaped, and can be modified, by the interactional context of the patient’s relation with the physician, and often have a significant effect on the course of illness. Meta-analytic studies have shown that psychological well-being has a protective effect and can enhance long-term survival in both healthy and diseased populations.48reason for … [his] sufferings,” recalling Nietzsche’s words that “He who has a why to live for, can bear with almost any how.” What was needed for survival was “a fundamental change in our attitude toward life.”23 Frankl drew on his experiences in the Nazi camps to develop his existential therapy, logotherapy, focused on people’s need for meaning. Frankl recounts how he warded off two would-be suicides in the camp by turning their expectations to people and purposes. Both prisoners believed they had nothing more to expect from life. Frankl insisted, instead, on what life still expected of them. For one, it was the love of a child waiting for him in a foreign country; for the other, completing a series of unfinished scientific books.23(pp100–1)Concentration camp prisoners noted the protective effects of a “larger” meaning for prisoners. Frankl, the Austrian psychiatrist, reports how he was struggling “to find the (p118) The Nazis also understood the corrosive effects of lack of meaning. A hallmark of the ghettos and camps was the utter arbitrariness of anti-Jewish policies, even to the point of conflict with other German war priorities.Warum?” (Why?), Levi asked a brutal camp guard, who answered: “Hier ist kein warum” (there is no why here).52(p35) For many prisoners, a moral mission “to bear witness” to the meaningless horror itself became a “why” in their efforts for survival.Camp prisoners all observed that ideologues fared better than ordinary inmates. Primo Levi, echoing Jean Améry, both agnostics, noted that “Not only during the crucial moments of the selection or the aerial bombings, but also in the grind of everyday life, the believers lived better … it was completely unimportant what their religion or political faith might be. Catholic … Zionists … Marxists and Jehovah’s Witnesses … Their universe was vaster than ours … more comprehensible. They had a key and a point of leverage … so that there might be a sense to sacrificing themselves … sorrow … was decipherable and therefore did not overflow into despair.”49A similar turn toward a larger purpose and meaning also is essential in everyday life. It enables people to transcend the immediate context in favor of more distant and important objectives. Decades of studies by Mischel on what became known as the “marshmallow test” showed how pre-schoolers’ differences in representing situations made it “either impossibly difficult or remarkably easy” to resist short-term gratification for a larger long-term goal, and that the differences carried forward into adult life and professional and personal success.62(pp40–1)Soon after his arrival in Auschwitz, Primo Levi received a lesson in survival from an experienced older inmate. The prisoner urged Levi not to neglect his care of self, and to remain meticulous with washing and cleanliness practices. At first, Levi was scornful about the patently absurd advice: why wash in filthy water, and in pervasively squalid conditions that would instantly nullify any fleeting hygiene? Better preserve one’s very limited energies for life. But soon Levi realized that it was not a hygienic recommendation at all, but rather an essential means for preserving one’s self-worth and moral survival. The Nazis engaged in systematic “excremental assaults” in the camps, forcing prisoners to live in squalid conditions. These measures were designed to hollow out the inmates psychologically and morally, and to reduce them to beasts, in the eyes of their captors and in their own. Washing was necessary for “dignity and propriety,” and “not to begin to die.”63The seminal work on personal control and health was conducted by Langer and Rodin, and Bandura expanded on the role of self-efficacy across a large variety of domains.In studies, a sense of self-efficacy has been found to be significantly correlated to a patient’s adjustment, coping, and resilience, and to the actual course of disease and treatment. In children, a sense of personal control was associated with better asthma control. In adults, longitudinal studies of heart disease patients indicated that a perception of control was associated with better adjustment to the disease, and similar links were also evident in breast cancer patients. A sense of control among patients with coronary artery disease after angioplasty also predicted a reduced likelihood of sustaining another cardiac event over 4 years.71Job had the inner strength to reject his friends’ moralizing intimations of guilt and shame. Many patients and other victims do not. Instead, they initiate, or internalize, social stigmas attached to their condition.In a chapter entitled “Shame,” Primo Levi recounted how shame persisted among his fellow Auschwitz prisoners, though on a rational plane they had nothing to be ashamed of.... That many (and myself) experienced ‘shame’, that is, a feeling of guilt during the imprisonment and afterwards is an ascertained fact … It may seem absurd, but it does exist.49Guilt, shame, and misplaced causal attributions are also common among rape victims, medical patients, and victims of other uncontrollable catastrophes.74Groopman described the story of a 29-year-old New York Orthodox Jewish woman who long delayed seeking attention for a very large cancerous breast mass, and then resisted treatment. She saw her cancer “as a punishment from God.”The antidote, in a medical setting, is a relationship that preserves the patient’s self-respect and dignity, by recognizing the patient’s voice and preferences, and engaging in shared decision-making. Decisions about medical treatments typically entail uncertainty and hard choices about outcomes and trade-offs. They may also lead to clashes between a patient’s preferences (autonomy) and what the doctor believes is in the patient’s best interests (beneficence). The conflicts can be most acute in end-of-life decisions. Ethically and empirically, the traditional paternalistic approach to such medical decisions undermines the patient’s experience.11Temporal focus also has a significant influence on motivation and action, and affects people’s determination and efforts to achieve their goals. People’s commitments are a function of the desirability of the goals, of the goals’ temporal distance, and of people’s perceived ability to influence the outcome.Patients also adopt temporal perspectives that can incline them to hope and the future, or hopelessness and helplessness.Conversely, positive expectancies for the future are linked to better health in a variety of conditions. Prospective cohort studies indicate that optimism is associated with better health outcomes in patients with ischemic heart disease, and with a lower risk for cardiovascular morbidity and for all-cause mortality. A strong and consistent association has been shown between dispositional optimism and a nearly 50% lower risk of cardiovascular mortality in elderly men over 15 years of follow-up. After coronary artery bypass surgery, optimism was a significant predictor of surgical outcomes and of a faster rate of physical recovery during hospitalization. In older adults, dispositional optimism was also associated with a decreased risk of cognitive impairment over a 4-year follow-up.82A patient’s negative bias toward their current condition, and toward a short-term rather than longer-term temporal focus, arises from two fundamental modes of human thinking, so-called systems 1 and 2, or the “hot” and “cool” systems.The multiple personal and social factors that influence a patient’s ability to respond to illness with resilience or hopelessness clearly interact with each other and can enhance or reduce the likelihood of particular outcomes. The interactions require further research, as do the generalizations, with a need to outline qualifications and limiting conditions. Yet it remains clear that doctors can help.During the Holocaust, victims often drew resilience from small acts of kindness by ordinary people. Victor Klemperer, the 60-year-old literary scholar and diarist from Dresden , recorded the kindnesses, small and large, from strangers and friends, that sustained the couple throughout the war. The gestures, Klemperer noted, may not help him in the end. But they provided comfort and consolation.85A demonstration of the ease and power of reversing, or flipping, decision frames and attitudes, for patients and doctors alike, was provided in a classic article by Tversky and colleagues, “On the elicitation of preferences for alternative therapies.” In the study, groups of patients and Harvard physicians were asked to choose between two treatments for lung cancer: surgery or radiation. They were all given data about the outcomes of the two treatments, which indicated that surgery yielded a clear 5-year advantage for life expectancy, but posed a slightly larger immediate risk than radiation. Half the participants received the data framed in terms of survival rates; the other half received the same data framed as mortality rates. The differential framing of the equivalent choices had a major effect. Both patients and doctors favored surgery over radiation far more often when the data were presented as survival rates instead of mortality rates. As Kahneman noted, the hot system is “rarely indifferent to emotional words” such as mortality or survival. It also gives much more weight to loss aversion, and to its prevention, than to an equivalent gain. Further data indicated that public-health professionals were equally susceptible to the framing of alternative public policies as “lives saved” or as “lives lost” scenarios.86Another classic example also epitomized how patients’ focus can be shifted away from the hot present, to a cooler, reflective longer-term perspective. In the story of Job, God intervened to cool the “hot” moralistic arguments of Job’s friends, and rebuked them for offering “darkened counsel” and speaking “without understanding.” In a memorable essay, “The median is not the message,” the evolutionary biologist S. J. Gould articulated the limits of knowability about his own catastrophic disease.Medicine has recently evolved in two opposite directions. On one hand, evidence-based medicine privileges the laboratory and the computer over the patient, both by necessity and choice. On the other hand, the experimental data also provide ever more evidence for the importance of the patient’s psycho-social “demand” side of medicine, in contrast to the doctor’s bio-cognitive “supply” side. The context of the intervention and the patient’s mindset have major diagnostic and therapeutic effects. The patient’s experience is shaped by perceptions of meaning, agency, self-esteem, and the future. At first sight, these would seem personality factors and long-term, large-scale dimensions not easily amenable to change. But there still is considerable room for more focused and manageable interventions. For the patient’s experiences also arise from within the therapeutic context, through the interaction with the doctor. In that proximal setting, the dimensions can be reshaped, for better and worse. A transformation of the patient’s sense of agency or hope, say, need not yield a resolution of the central issue (nor did Primo Levi’s washing in the camps). However, local reaffirmations of self, reorientations of time, or reframings of meaning (as were commonly practiced during the Holocaust) may be powerful and easy interventions critical to the long-term outcomes. They reflect the inherently interactional nature of medicine and emphasize the role of medical social sciences in the therapeutic context.


Farmers require evidence‐based guidance to make optimal decisions, enabling them to reduce costs by increasing the efficiency of input use. We discuss how decision support systems could be improved and made more useful for the farmer. There is growing recognition that the agricultural industry is undergoing a period of transformation to become a more information‐intensive enterprise Bruce, . There iAs we enter an ever‐more sophisticated information age, there is a need to bring science and farming communities together to turn information into relevant, actionable farming knowledge  are one suggested solution to deliver it to practitioners (Dicks, Walsh, & Sutherland, To expedite improvements, a step‐change is needed within the design of agricultural DSS. Design teams are based in a variety of places, including universities, commercial software companies, and elsewhere in the agricultural industry. Although there are examples of successful DSS, which are used and well liked in practice, many suffer from similar design flaws, which restrict uptake (Rose et al., This recent work has still found that DSS are sometimes not easy to use, answer the wrong questions, fail to fit the workflow or decision habits of farmers, are too costly, lack a clear purpose, are poorly marketed, and lack any clear long‐term maintenance plan (among other factors—see Rose et al., We encourage developers of DSS to take heed of the good advice already in the literature; first, to consult users from the outset; second, to include team members with specialist user‐oriented software knowledge (Lindblom et al., None declared.