Family caregivers play an important role in assisting their family members with cancer, but their influence on the treatment decision‐making process has not yet been adequately investigated. This exploratory study approached this topic via reconstructive methodology, focusing on assessing patient‐caregiver relationships.We conducted semi‐structured interviews with 37 mostly elderly cancer patients (median age: 74 years) about the context of their diagnosis, treatment decision, and family support. Additionally, we interviewed 34 caregivers of cancer patients. Of these, 25 were related to patients interviewed. We analyzed the interviews via a multi‐step coding method informed by Grounded Theory methodology toward characterizing patient‐caregiver relationships, the treatment decision‐making process, and the caregivers' role therein.In the majority of cases (86%), patients were being supported by caregivers. We categorized patient‐caregiver relationships in regards to the caregivers' involvement in the therapy decision‐making process. We found patient‐caregiver interaction patterns that indicate the potential of caregivers to decidedly influence the therapy decision‐making process. Yet, only in 38% of cases, a caregiver attended relevant patient‐physician‐consultations.Depending on the nature of the patient‐caregiver relationship, the traditional concept of shared decision‐making, which assumes a dyadic relationship, needs to be extended toward a more dynamic concept in which caregivers should be involved more frequently. This could enable physicians to better understand a patient's reasons for or against a therapy proposal and ensure that the patient's wishes are communicated and considered. On the other hand, strong caregiver‐involvement bears risks of over‐stepping elderly patients' wishes, thus violating patient autonomy. This is especially true of elderly cancer patients and oral cancer therapy, with adherence rates down to 46%.Family confidants and caregivers (CGs) play an important role in supporting their ill family members in many respects. Some of their major duties are managing the home and housekeeping and support in domestic chores including preparing and assisting with meals, dealing with mobility issues, arranging for transportation to medical care facilities, making medical appointments, managing prescription medication and also offering emotional support. However, the extent of CGs' influence on patients' decision‐making regarding therapy recommendations given by the oncologist is not clear. Therefore, we conducted a study in which we analyzed interviews with older cancer patients (median: 74 years) and their CGs, focusing on the patterns of relationships between them.2We conducted semi‐structured,The interviewers prompted the participants to give free and in‐depth answers, as our approach was exploratory. The notion that CGs are an important group in the context of elderly cancer patients' illness did not only emerge during the analysis of patient interviews. As we did not pursue a preconceived research question and did not a priori focus on a particular dimension, we did not opt for an iterative data collection process  and informed consent was sought from all participants.3Of 37 patients interviewed, 32 (86%) stated to have been supported by a CG during the course of the illness. We analyzed information on 41 patient‐CG relationships (32 patients with CGs and 9 CGs interviewed separately). We distinguished patient‐CG interaction patterns into “passive”  and “active”  regarding the respective CG's involvement in the therapy decision‐making process (see below). Patients with actively involved CGs were aged 73 to 89 (median: 80) compared to a range of 55 to 89 (median: 73) for patients with passive CG involvement. Passive CGs were present at relevant doctor‐patient conversations in 31% of cases. In cases of active CG‐involvement, the participation rate was 45%.3.1I actually just sat there and listened and asked a few questions. My wife does all that and then I got everything I wanted to know myself, right? Passive CGs were supportive by addressing the needs of the patients reactively. They helped with overcoming logistical challenges, coordination of appointments, or alleviated stressful situations through their presence:…what was a priority for us was to provide encouragement. Not to make him understand that life was over now and: ‘We don't care about you any‐more’, but always to be there for him’. […] we deliberately did not want to talk about these decision‐making processes or exclusively about this topic. So, we tried, simply to keep everyday life going, to put it simply: ‘When we come (for a visit), we don't just talk about this disease’. Because we saw that that was important …These CGs were also concerned with the patient's general mental well‐being by creating a sense of normality:It should be noted that “passivity” only refers to the CG's involvement in the patient's decision‐making process and is not a value judgement and should not be understood as indifference toward the patient's illness.3.2Active CGs were concerned with shaping and steering the therapy decision‐making process. They considered their strong involvement in this process as vital for adequately meeting the patient's needs. Taking into account the multitude of motives for such involvement, we expanded on the broad category of “active” CGs into two different categories: (a) patient and CG as a unit with the CGs identifying themselves with the patients' illness, and (b) reversal of the care relationship.3.2.1And it was clear to us that we go for the  discussion and then we also went together directly, we went to the discussion, (thinking) it may be that he (the doctor) now will tell us this is now a carcinoma. And that turned out to be the case. […] We sat down at home and thought about what we'd find to be the best. And since my husband and I talk openly about the things that concern us, each of us was able to say clearly: what do I want, what (burden) am I willing carry as a wife? And basically, I said I would carry whatever (burden resulting from) how he decides. Especially in cases of married couples, we observed CGs who identified themselves strongly with the patients' illness and their situation. In these couples' accounts, the aspect of experiencing the therapy process together was emphasized and perspectives were mutually shared. Accordingly, the cancer was perceived as a challenge that could only be overcome through joint efforts, and therapy decisions were always portrayed as a consensus, weighing the consequences for each individual and the relationship.This can also create a closeness that you don't get when life goes so smoothly. No. So I have to be honest. We find that it has enriched our relationship because we have noticed how much we can give each other meaningfully in such a life or in such a difficult life situation. So that's what I think. The extent to which a CG influences the therapy decision in these cases is difficult to determine since the eventual therapy decision is the result of a complex interpersonal and individual process. In the case cited above, the CG stated that it was the patient's decision. At the same time, the CG mentions that the burden that would have to be carried by her was also a relevant factor in the decision. The relevant steps and decisions were framed as being taken together. It can therefore be assumed that in such a patient‐CG relationship, the values, views and assessments of the CGs play a significant role in the choice of cancer therapy and the way its consequences are handled. CGs and patients thus influenced each other's perception of cancer, seeing it as a test that also conferred meaning on their relationship:3.2.2…the question was, the woman is over 90 or is 90, what is one to do? I tried to pave the way. Sensible diagnostics, sensible decision… A reversal of the care relationship between patients and their CGs could be observed when there was an apparent discrepancy in their respective skills in understanding the medical content and processes and their implications. In our sample, these CGs were always considerably younger than the patients . Either the patients were already having difficulties in their day to day lives owing to advanced age even before cancer diagnosis, or they had been rendered unable to act entirely independently by the acute experience of their cancer. CGs had a special responsibility here. The support to be provided by them was more comprehensive and went beyond mere support and assistance. CGs considered this form of involvement as a necessary condition for the patient to receive adequate treatment.These CGs sometimes saw the need for further examination and clarification and were often initiators of the decision‐making process toward accepting treatment.And then to the gynecologist and he discussed the therapy options with us and there I was able to discuss the questions we had considered (earlier) and so on very well. And I think that maybe that helped her once again, because I think one is simply overwhelmed in the situation, or one has so many thoughts in one's head that sometimes one can't ask questions clearly, although one would simply like to know so many things, isn't it? There I had the feeling that sometimes when she went there, (she felt) also the doctor's conversations ….went too fast, right? Well, it was sometimes good when I was there, so that we could talk about it afterwards. Because sometimes it was so that I had the feeling that she was overwhelmed… when things went so fast. So (when the doctor goes on): This, this, this! […] So for that, a 10‐minute conversation or something is just a bit fast. The interviews analyzed made it clear that, in particular, the coordination of medical appointments and discussions could represent a great challenge for older patients. In several cases examined, this was a central topic which also determined the role of the CGs: these patients wished to have their CG present at medical consultations, and the CGs, for their part, were convinced that their presence at medical discussions was necessary to ensure, among other things, that no information was lost, neither the relevant information about the patient to be communicated to the doctor nor that given by the doctor to the patient.What is it like for an elderly person? So, here was my mother, I think – she said three Hallelujahs because I was there. So not just for psychological support, but really, yes? […] “We have to go that way now”. “And then we go now”. “Sit down there and I'll knock” and, yeah. I think that's difficult for older people in hospitals. […]I don't think she can appreciate that. […] she doesn't even have to These CGs' forms of support ranged from storing, translating, and collecting medical and organizational information to extensive control over the patient's actions and decisions. Their role was offering guidance in making therapy decisions and not merely supportive, in the sense of being present and being a listener.…but now that it has ‐ but it has totally changed. So, she has now put herself completely in my hands, that is the way I have to put it now. Leaves all decisions to me entirely, has also given up all power of disposal over finances, over discussions to be conducted. Takes me with her, or asks me to accompany her everywhere when she goes to doctors, which she has never done before…The transformation of the CGs' role was a key observation in several interviews. This transformation has led to a shift of the CG's role in the patient‐physician‐CG triad and can be described as a role reversal: The interviews analyzed here were mostly mother‐daughter relationships. The assumption of responsibility by the CGs thus meant a reversal of the care relationship. While the “mother” bears responsibility and provides care, the “child” is freed from responsibility for itself and its actions. These CGs reported that they became aware of this role reversal when facing the necessity to make vital and immediate cancer therapy decisions. Even though they had already assumed greater responsibility for their parents or parents‐in‐law, the illness accelerated this process.Because we said: “You can't just give up now. That is not like you.” Because she hasn't done that all her life. And then I said: “Mummy, this isn't like you! You haven't explored all the options yet.” […] So I said: “it is easy to say ‘not any more’, that …” I say, “No. No. Not that.” In one of the analyzed cases, the patient initially decided against the further treatment of her cancer. By questioning the validity and counteracting the patient's decision, the CGs assumed an active role that was decisive for the final therapeutic decision in favor of treatment. CGs thus can play a decisive role in therapeutic decisions.The patient had decided not to undergo further treatment. The daughter felt that this decision did not fit her life‐history and identity. The CG saw her function as contextualizing and counteracting a decision that she perceived to be irrational. In her view, she protected her mother from the consequences of a decision made under distress. She infringed the patient's autonomy to find a treatment decision consistent with her mother's values (“not giving up”). This illustrates that the concept of “autonomy” in elderly cancer patients' therapy decision making is not absolute.4The relationship between patients and their CGs can be complex and multilayered, as has been shown, for instance, by studies on patients' feelings of being a burden in the context of palliative care decision‐making.When interpreting the interviews with CGs, it must be considered that not all CGs were willing to be interviewed. Forty‐six percent of CGs declined to be interviewed. The reasons given were heterogeneous, most often, no reason was given, and some CGs indicated that the situation was too stressful for them. This high rejection rate may have led to a selection of engaged CGs (bias) in our study. It is also interesting to note that although the CGs regularly criticized the health care system or organization details, which they considered needed improvement, they rarely questioned the specialist's competence as far as therapy proposals were concerned. This corresponds to the experience of the authors in oncological clinical practice. The CGs rather questioned whether a therapy concept that was generally correct was also the optimal (meaningful) one in the particular case of their family member.Although most patients (86%) indicated that they were supported by a CG, CG participation in patient‐specialist consultations was surprisingly low (38%). There is little information on whether this percentage is representative, but it corresponds to the authors' experience. We suggest that CGs should be more often integrated into the decision‐making encounters between patients and their oncologists.The patient is the sole addressee of all medical clarifications during medical consultations. This principle is not only ethically correct but also legally enshrined. It should be preserved especially in the CG‐patient relationship we considered “care relationship reversal,” where CGs take upon themselves the responsibility for their patients because they are convinced that they know what is good or bad for the patients. Active CGs, by our definition, tended to assume that they, in particular, knew the intentions and limitations of the patients; examples are given in the results section. In the absence of CGs at patient‐doctor consultations, this situation can become particularly problematic. The patients might not have had adequate time and opportunity to express their concerns or could not participate in the discussions for various reasons, including hearing loss or speech problems. In these cases, the doctor might make a therapy proposal (or de facto decision) based on inadequate information received from the patient regarding therapy wishes. It is also possible for the patients to have misunderstood what the doctor told them. This may result in the failure of patients to pass on the physician's information correctly to the CG. Professional experience suggests that frustration on the doctor's side is especially high if agreement on therapy options is reached, but the patients later change their minds after discussing them with their CGs without further consultation with the doctor. Thus, the presence of CGs in patient‐doctor conversations can help physicians make appropriate therapy decisions in the sense of decisions that include the patients' own assessment of their conditions and wishes. However, in the case of an active CG taking over responsibility and decision‐making for the patient, the presence of a CG forming a triad in medical consultations carries the risk of the patient's individual wishes being overridden by the CG's point of view. This has been found in Asian societiesThe gold standard in patient‐doctor communication is the concept of “shared decision‐making” (SDM), which has meanwhile been revised and modernized several times.Open Access funding enabled and organized by Projekt DEALThe authors declare no conflicts of interest.Conceptualization: Frank Gieseler, Andreas Heidenreich, Jacqueline Schubert, Christoph Rehmann‐Sutter, Christina Schüess, Joachim Hübner, Alexander KatalinicData curation: Frank Gieseler, Andreas Heidenreich, Jacqueline Schubert, Christoph Rehmann‐Sutter, Frank Wörler, Christina Schüess, Joachim Hübner, Susanne ElsnerFormal analysis: Frank Gieseler, Andreas Heidenreich, Jacqueline Schubert, Christoph Rehmann‐Sutter, Frank Wörler, Christina Schüess, Joachim Hübner, Susanne Elsner, Katarina Block, Alexander KatalinicFunding Acquisition: Frank Gieseler, Christoph Rehmann‐Sutter, Joachim Hübner, Achim Rody, Nicolas von Bubnoff, Tobias Keck, Monica Steimann, Gero Endsin, Alexander KatalinicInvestigation: Frank Gieseler, Andreas Heidenreich, Jacqueline Schubert, Susanne Elsner, Achim RodyMethodology: Frank Gieseler, Andreas Heidenreich, Jacqueline Schubert, Christoph Rehmann‐Sutter, Frank Wörler, Christina Schüess, Joachim Hübner, Susanne Elsner, Katarina Block, Monica Steimann, Alexander KatalinicProject Administration: Frank Gieseler, Christoph Rehmann‐Sutter, Christina Schüess, Joachim Hübner, Achim Rody, Tobias Keck, Monica Steimann, Gero Endsin, Alexander KatalinicResources: Andreas Heidenreich, Achim Rody, Nicolas von Bubnoff, Tobias Keck, Monica Steimann, Gero EndsinSupervision: Frank Gieseler, Nicolas von Bubnoff, Alexander KatalinicValidation: Frank Gieseler, Andreas Heidenreich, Jacqueline Schubert, Fabian Frielitz, Frank Wörler, Christina Schüess, Susanne Elsner, Katarina Block, Alexander KatalinicVisualization: Frank Gieseler, Andreas Heidenreich, Jacqueline Schubert, Fabian Frielitz, Frank Wörler, Christina Schüess, Susanne ElsnerWriting ‐ original draft: Frank Gieseler, Andreas Heidenreich, Jacqueline Schubert, Fabian Frielitz, Christoph Rehmann‐Sutter, Christina SchüessWriting ‐ review & editing: Frank Gieseler, Andreas Heidenreich, Jacqueline Schubert, Fabian Frielitz, Christoph Rehmann‐Sutter, Frank Wörler, Christina Schüess, Joachim Hübner, Susanne Elsner, Katarina Block, Achim Rody, Nicolas von Bubnoff, Tobias Keck. Monica Steimann, Gero Endsin, Alexander KatalinicAndreas Heidenreiche, Susanne Elsner, Jaqueline Schubert, Joachim Huebner, Alexander Katalinic.Frank Gieseler is the guarantor. He declares that this manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained.


In paper “VISTO: An Open-Source Device to Measure Exposure Time in Psychological Experiments”, a device that measures the onset of experimental visual stimuli is described. This device acquires luminance information through a light sensor BPW42, and then records luminance waveforms or onset times. Throughout the paper however, sensor BPW42 was erroneously described as a photodiode, while it is a phototransistor. Moreover, the wiring scheme in In the revised The authors would like to apologize for any inconvenience caused.


People are either “left-brained” or “right-brained,” which helps to explain individual differences in learning. On the one hand, classical neuroscience findings did provide solid basic evidence that the human brain displays a certain degree of functional hemispheric lateralization  with the following neuromyth statement:In the past decade, numerous surveys have been conducted in more than 20 countries around the world to measure the prevalence of neuromyth beliefs among educators  to 5 (definitely true)] to a closely similar neuromyth statement:This is not an idiosyncratic case in the field see . In anotAdapting teaching methods to the “multiple intelligences” of students leads to better learning.Frames of Mind, some years ago, there may have been merit in exposing neuromyths, but the practice has gone too far and has now become problematic rather than helpful.The opening survey statement from Blanchette Sarrasin et al.  caught HSpectrum Project, contemplating the hypothesis—embedded into the opening survey statement—that matching modes of instruction to MI intelligence profiles promotes learning. When taken for granted, such an unproven research hypothesis is considered as a false belief—a neuromyth derived from MI theory. Then, I argue that research aimed at testing the MI–instruction “matching” hypothesis is still hampered by a lack of satisfactory measures of MI intelligence profiles. Finally, I expose how Gardner's .biopsychological potentials to process information, Davis et al. , while others do not . Would it be more appropriate to drop the “neuro” prefix and collectively call them “edumyths”? Actually, it does not matter. They are myths.But even with no “neuro” at all, MI theory would still qualify as a potential source of neuromyths, as not to provide brain-based educational recommendations. The basic idea of MI theory is that Homo sapiens is biologically endowed with a set of relatively autonomous mental tools (termed “intelligences”) that can be activated to solve problems or to fashion products that are of cultural value. MI theory posits that every individual has, at their disposal, a full intellectual profile of eight intelligences. From one individual to another, some intelligences exhibit low, some exhibit average, and some others exhibit strong biopsychological potentials, but the whole MI intelligence profile—a spectrum of brain computational powers working in synergy—is mobilized to adapt Homo sapiens to newly encountered, culture-bound situations.Above all, the primary aim of MI theory was to expand the traditional, narrow IQ concept of intelligence to the whole spectrum of brain computational powers, Unlike Gardner's  allegaticatalyst for reflection on a pluralistic, rather than a unitary, view of intelligence .Educational scholars nonetheless cling to the vision of the optimal match between student and material. In my own view, this tenacity is legitimate: after all, the science of educational psychology is still young; and in the wake of superior conceptualizations and Homo sapiens freely evolving in ecologically valid, culturally meaningful contexts. For instance, to measure spatial intelligence, “one should allow an individual to explore a terrain for a while and see whether she can find her way around it reliably” . A set of 15 learning activities covering seven knowledge domains was created to provide a contextually valid assessment battery of MI intelligence profiles. For instance, to assess interpersonal intelligence, children manipulated figures in a scaled-down, 3D replica of their classroom . Although the 15 assessment tasks from the Spectrum battery have been “shown to demonstrate reliability” ”  but still open to scientific inquiry, has somehow been taken for granted by laypersons and, over time, embedded into popular culture. In other words, it became a neuromyth.Accordingly, the opening survey statement is considered as a neuromyth because of a lack of compelling evidence—mainly due to unsatisfactory measures of MI intelligence profiles—that matching modes of instruction to MI intelligence profiles promotes learning. This intuitively appealing hypothesis, contemplated by Gardner's research team at some point , Gardner (and (2) to disclose caveats pertaining to direct application of MI theory in educational settings, most notably that research aimed at testing the MI–instruction “matching” hypothesis is still hampered by a lack of consensually agreed upon measures of MI intelligence profiles  The author confirms being the sole contributor of this work and has approved it for publication.The author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Embodied conversational agents (ECAs) have the potential to stimulate actual use of eHealth apps. An ECA’s design influences the user’s perception during short interactions, but daily life evaluations of ECAs in health care are scarce.This is an exploratory, long-term study on the design of ECAs for eHealth. The study investigates how patients perceive the design of the ECA over time with regard to the ECA’s characteristics , small talk interaction, and likeliness of following the agent’s advice.We developed an ECA within an eHealth self-management intervention for patients with both chronic obstructive pulmonary disease (COPD) and chronic heart failure (CHF), which we offered for 4 months. Patients rated 5 agent characteristics and likeliness of following the agent’s advice before use and after 3 and 9 weeks of use. The amount of patients’ small talk interaction was assessed by log data. Lastly, individual semistructured interviews were used to triangulate results.P>.05 for all characteristics) and only 1 participant finished all small talk dialogues. After 3 weeks of use, the patients were less likely to follow the agent’s advice (P=.01). The agent’s messages were perceived as nonpersonalized and the feedback as inappropriate, affecting the agent’s perceived reliability.Eleven patients  with COPD and CHF participated (median age 70 years). Patients’ perceptions of the agent characteristics did not change over time (This exploratory study provides first insights into ECA design for eHealth. The first impression of an ECA’s design seems to remain during long-term use. To investigate future added value of ECAs in eHealth, perceived reliability should be improved by managing users’ expectations of the ECA’s capabilities and creating ECA designs fitting individual needs.Netherlands Trial Register NL6480; https://www.trialregister.nl/trial/6480 The number of people having a chronic disease, such as diabetes, cancer or chronic obstructive pulmonary disease (COPD), is increasing . COPD isTo further facilitate this chronic disease self-management in daily life, eHealth apps can be used. eHealth apps can provide patients insight into their behavior and disease by symptom monitoring, and patient-tailored and accessible support in their home setting, supervised by their health care professional at a distance . AlthougA different way of providing  support includes the use of embodied conversational agents (ECAs). ECAs are defined as more or less autonomous and intelligent software entities with an embodiment used to communicate with the user . By faceThus, ECAs have the potential to promote engagement with eHealth apps. However, a recent review on the design of ECAs for eHealth  shows noTo develop ECAs to support users in self-management of chronic diseases, such as COPD and CHF, more research is necessary on how ECA design affects users’ perceptions of an ECA in the intended context of use: a long-term, daily life setting. Research should start in early stages of development of such ECAs, as small-scale eHealth evaluation studies focusing on usability, feasibility, and end-user experience allow researchers to gain detailed information that can be used for further improvement of an eHealth app . The impThis is a first exploratory study on ECA design for eHealth in a long-term, daily life setting. In this study, an ECA is implemented into an eHealth self-management intervention for patients with COPD and CHF, offered for approximately 4 months. The objective of our study was to investigate how users perceive the design of the ECA over time. In particular, how they perceive the agent’s characteristics  and the agent’s small talk, and how likely they are to follow the agent’s advice.This study was performed as part of the MATCH study. The aim of the MATCH study was to investigate the feasibility of an eHealth self-management intervention for patients with COPD and CHF over a 4-month period. The ECA was implemented into this eHealth self-management intervention. The MATCH study was approved by the Twente Medical Ethical Committee and registered in the Netherlands Trial register (NL6480).People were included for participation in the MATCH study if they (1) had a clinical diagnosis of both COPD and CHF; (2) had at least two COPD or CHF exacerbations or at least one hospitalization for COPD or CHF in the 2 years preceding study entry; (3) were at least one week after prednisolone/antibiotics/furosemide course and hospitalization and at least four weeks after rehabilitation; (4) were at least 40 years of age; (5) were able to understand and read the Dutch language; (6) were able to use a smartphone, tablet, or PC; and (7) provided written informed consent prior to participation. People were excluded from participation if they (1) had terminal cancer or were at the end stage of another serious disease, (2) had another serious lung disease, (3) expected cardiovascular intervention within 3 months, (4) were enrolled in randomized controlled trials or a trial with study medication, (5) were waiting for a heart or lung transplantation, and (6) received renal dialysis.The self-management intervention was offered through an app on a tablet   and consSelf-management moduleDaily symptom diary: registration of symptoms related to COPD , CHF , and common comorbidities  and classification of symptoms in case of symptom deterioration determined by the patient by comparing the symptoms experienced in the last 24 hours with his or her “usual” symptoms on his or her “what are my “usual” symptoms” card. In case of any symptom deterioration, patients were asked to classify each symptom as “normal,” “slightly increased,” or “significantly increased.” The daily symptom diary was connected to a decision-support system that automatically launched self-management advice in case of worsening of the patient’s clinical condition (according to symptoms and weight). The automated decision support system was translated from an evidence-based self-management intervention including paper versions of multimorbid exacerbation action plans for patients with COPD and comorbidities  started with saying: ‘Did you follow the instruction?’ Well, I did not see any instruction yet.P=.01) in the distribution of the values over time was found.P=.07) and t1 and t2 (P=.48), but did show a significant difference for the pair t0–t1 (P=.01). The participant’s indicated likeliness of following the agent’s advice statistically dropped at t1 compared with t0.As a second step, pairwise comparisons of t0 and t1, t0 and t2, and t1 and t2 showed no significant difference between t0 and t2  indicated that he would first go to a doctor to verify the agent’s advice of taking prednisolone. Although it should be noted that the agent did not provide the patient with advice on taking prednisolone directly, the agent only mentioned that there was an uncompleted action on the action list, which might have been taking prednisolone. However, the actual advice was determined by the automatic decision support system. Another participant argued that the agent did not respond to user input and, therefore, did not find the agent’s advice valuable. One participant mentioned not listening to a cartoon figure, and another stated:In the interviews, the majority of the participants indicated that they would not I do not listen to a device, I do listen to people.Furthermore, a participant indicated that adults have their own responsibility, and therefore, this participant did not feel the need for an agent to suggest what to do. One participant argued not having the time to follow the advice, and therefore, not seeing the benefits of the agent’s advice. By contrast, 3 participants said they sometimes did follow the agent’s advice. One of these participants sometimes performed the physical exercises advised, as this participant valued the exercises. Another indicated to follow the advice of calling the case manager or reading information pages, but would not follow an advice to start prednisolone. The participant said that being wrongly advised to take prednisolone could have negative health consequences, believing that the technology’s advice is not always correct. Furthermore, a participant  indicated to call the case manager if advised, as she would normally also have done so. As explained before, it should be noted that the actions of calling the case manager and taking prednisolone were part of the action list of the self-management app, but were not presented by the agent itself.general attitude toward the ECA design. The theme does not correspond to our main objective, but we present the findings to provide insight into the context of the results described above. The interviews show that the majority of the participants (n=7) did not think that Sylvia had any value, illustrated by comments, such as:The last theme we identified was I do not have any connection with Sylvia.Sylvia is not it.Arguments supporting this opinion were the agent’s statements being too obvious, general, or simplistic: a participant described that it was clear that the dialogues were not personalized, but a result of a general set of if–else statements.Also, Sylvia led to lots of frustration and annoyance, as supported by statements such as:I found this female extremely annoying.Sylvia was a very irritating woman.Frustrations were caused by Sylvia providing incorrect feedback on the inhalations and suggesting actions not fitting the user’s health status, as illustrated by a participant:I thought: “Gosh, what are you talking about? I’m not complaining about respiratory problems.”One participant  particularly indicated he would like to switch off the agent. By contrast, the interviews showed some positive attitudes toward Sylvia. One participant said that the agent triggered laughing, as Sylvia would adapt the conversation to the answers given. This participant explained:Occasionally, if I felt bad, I could laugh again.This participant also said that Sylvia made the app more personal, for example, by addressing the user by his or her first name:It [Sylvia] creates a slightly more informal atmosphere, which I always like, I feel a bit more free.In addition, this participant believes people should get used to interacting with agents:When you are at the station, you have this as well [...]. You enter the station and then you face a digital agent. This is something we should get used to, I think.Lastly, participants suggested improvements for the interaction with the agent. First, 2 participants explained they would like to be able to type a question in an input field and receive a personalized answer. One of them sketched a scenario in which a patient, who is not feeling well, types in a question into an input field, for example “I am feeling stuffy, but have taken prednisolone: what should I do?” and the app would respond with an answer 24/7. It should be noted that one participant did not understand that Sylvia was a digital agent. He thought that Sylvia represented one of the real people involved in the self-management meetings.This exploratory study aimed to investigate how an ECA’s design is perceived by its users when implemented in a long-term, daily life setting. Although the results of this study should be interpreted carefully, as this is a small-scale study, they provide first insights into an ECA’s design for self-management and guidelines for follow-up work in terms of both development and evaluation. Our study shows that the patient’s perception of friendliness, expertise, reliability, involvement, and authority of the ECA did not change over time. The majority of the users were not interested in the agent’s small talk and the likeliness of following advice decreased after 3 weeks of use.First, our study shows that the perception of the agent’s characteristics at first glance was similar to that after 2 weeks and 9 weeks of use, suggesting that the user’s first impression does not change over time. To the best of our knowledge, there are no studies on how these perceptions change over time. But, ter Stal et al  showed tHow do you design an agent for self-management that creates positive impressions that persist? Our results suggest that an agent for self-management should be friendly, reliable, and involved and should have expertise, because patients rated these characteristics as important. Cafaro et al  found thIn addition, our study showed that a photorealistic agent could result in users being more likely to follow the agent’s advice, compared with a static cartoon. Van Wissen et al  indicateFurthermore, our study showed that the majority of the users was not interested in the agent’s small talk. Although we expected that the small talk would increase users’ engagement through companionship building with the agent , this seLastly, our results show that patients were less likely to follow the agent’s advice over time. We expect that the participants had a negative adaptation gap, meaning that their expectations of the agent’s capabilities did not match the agent’s actual capabilities . After aOur results underpin the importance of applying UCD methods throughout the various development phases of eHealth apps . By incoThe strength of our research is that we evaluated the perception of an agent’s design at an early development stage with the end users. Furthermore, participants interacted with an agent in a daily life setting and during a longer period of use: a setting which is rare in agent research, mostly consisting of research on short-term interaction with agents in laboratory settings. However, this long-term, daily life setting put quite some load on participants. Because of the exploratory character of the study, a limited number of patients participated, which should be taken into account when interpreting the results. However, the results can provide guidance for follow-up agent development and evaluation. Furthermore, participants used a Fitbit, smart scale, and a smart sensorized inhaler in combination with the self-management app. Many participants complained about the sensors not working properly. This might have affected the participant’s perception of the agent, as some of the messages of the agent were based on incorrect sensor information. Lastly, the interviews focused on all elements of the self-management intervention, not specifically on the design of the agent. Not all participants provided information related to the research question of this study, and, therefore, we should be careful with interpreting the results of the interviews.This exploratory study provided first insights into ECA design for long-term, daily use. An agent’s design is important for patients to establish a good first impression of the agent, which remains during long-term usage. Based on our findings we expect that ECAs do have the potential to be used for self-management, but several design aspects should be investigated in order for ECAs to become successful for increasing engagement in eHealth. When designing ECAs for self-management, we recommend designing an agent that is friendly, reliable, involved, and that has expertise, such that designers can implement and evaluate personalized content and small talk with sufficient variation, and find a good balance between small talk and health-related content. Careful consideration should be given to the apparent realism of the agent to find the sweet spot between facilitating expertise  and managing expectations of intelligence . In combination with managing the user’s expectations of the agent capabilities, a personalized ECA design fitting individual needs could increase the agent’s reliability and, therefore, the user’s likeliness of following the agent’s advice. This way, the ECA design could be upgraded to a higher TRL for which the added value and clinical benefits can be evaluated in future research.


Research nurses, midwives and allied health professionals are members of an important emergent profession delivering clinical research and, in the United Kingdom, have been the focus of considerable investment by the National Institute for Health Research (NIHR). This paper considers the experiences of research nurses, midwives and allied health professionals in relation to professional identity work, recognizing these are coproduced alongside others that they interact with .Semi-structured interviews were conducted with 45 nurses, midwives and allied health professionals in the UK about their experiences of working in research delivery. Interviews were transcribed verbatim and thematically coded and analysed.Our analysis highlights how research nurses, midwives and allied health professionals adjust to new roles, shift their professional identities and undertake identity work using uniforms, name badges and job titles as they negotiate complex identities.research and as a healthcare professional, within the unfolding landscape of health research. We embed our study findings in the context of the newly emerging clinical research practitioner workforce, which further exacerbates and complicates the role and identity complexity for nurses, midwives and allied health professionals in research delivery.Research nurses, midwives and allied health professionals experience considerable challenges as they enter and transition to a research delivery role, with implications for their sense of professional identities. A change in the work that they undertake and how they are (or perceive they are) viewed by others  has implications for their sense of professional and individual identity. The tensions involved extend to their views on symbols of professional identity, such as uniforms, and as they seek to articulate and demonstrate the value of their conjoined role in  Recent growth in clinical research activity—in the United Kingdom particularly through the National Institute for Health Research (NIHR)—has generated the new professional roles of research nurses, midwives and allied health professionals (R-NMAHPs) who now play an important role in delivering clinical research . In thisR-NMAHPs have been the focus of considerable interest, strategy and leadership investment by the NIHR e.g. –23). Cli. Cli23])There is a growing literature on the clinical research delivery workforce in the United Kingdom, with the majority focused on nurses . Uniforms are emblematic of these professionalizing strategies, which include abandoning frilly caps and starched aprons, introducing trousers, and sometimes having no uniform at all. As Timmons and East  argue, “Allen  argues tForegrounding caregiving as the defining feature of the nursing profession also neglects the diversity of nursing roles, and this also holds relevance to midwifery and allied health professions. In this paper, we add to this diversity the heterogeneous roles of the R-NMAHPs whose daily activity may consist almost entirely of (invisible) organizing work. Whilst the themes of invisible work, professional boundaries and identity have been explored largely in the nursing literature, we suggest the concepts are relevant to a wider range of healthcare professional (HCP) roles involved in research delivery.A qualitative interview study explored the experiences of a sample of R-NMAHPs in the United Kingdom. Forty-five in-depth interviews were conducted with individuals currently or previously employed as research nurses, midwives and AHPs. The study was funded by the NIHR Oxford Biomedical Research Centre (BRC) and approved by the Berkshire NRES Committee South Central.A maximum variation sample was sought , which iThe interviews were conducted by AM between December 2017 and July 2018, in participants’ homes or alternative meeting spaces. Interviews were semi-structured, with an opening question inviting participants to talk about their experiences as a research nurse, midwife or AHP and with follow-up prompts .A coding framework was developed by AM based on interview content and relevant literature, and refined throughout coding in discussion with LH. NVivo12 software was used to organize the data and facilitate the coding process using thematic analysis. Coding reports were shared with co-authors and analysed thematically.Forty-five in-depth interviews were conducted with individuals currently or previously employed as research nurses, midwives or AHPs . A few identified as nurse researchers, midwife researchers or AHP researchers leading their own research, including those undertaking or who had completed academic research qualifications such as a PhD; these individuals had previously worked in, or continued to also work in, research delivery roles. The distinction between the roles was sometimes a source of confusion and led to some R-NMAHPs feeling disappointed that they were not or could not be involved in other stages of research. Two participants were qualified in both nursing and midwifery, and one participant was qualified in both midwifery and health visiting.A diverse range of experiences of, and views on, professional identity featured in the interviews. We identified three prominent themes: (i) adjustment to new roles; (ii) shifting identity; and (iii) complex identities and identity work .I didn’t realize how much admin there was going to be. And how much physical desk work and paper work. […] At the very beginning I just thought “this is never ever going to sink in”. (R-N01)2There is a little bit of a dance and a re-adjustment. […] I won't say that it's disappointment but it's a regrouping of how perhaps I, or other people I can see, think of being a research midwife, because sometimes it's a little bit removed from the ideas. (R-M01)Many R-NMAHPs found adjusting to a new role in research delivery challenging. Some felt they had a good grounding in research activities before starting their first post, but others arrived with little knowledge or practical experience. R-NMAHPs described having to adjust to working with new colleagues or working with existing colleagues in new ways, adopting different patterns and paces of work and undertaking new types of activities or approaching existing activities and responsibilities in a different way. The realities of the role could be very different from expectations.You're still doing the work on your own, you're still one-to-one with a woman, whatever it be—research or clinical. Because as midwives, they’re autonomous practitioners. (R-M07)Some research midwives suggested independent working was less of an adjustment when they moved into research delivery, in contrast to other professions typically engaged in team-based clinical work:Back in 1991, we were just thrown into it. (R-N04)I went from working my shifts to Monday morning starting in research and “right, here you go”. And sort of learnt a lot as I was going. (R-AHP01 [paramedic])Inconsistent approaches to, or the absence of, formal and informal training for new R-NMAHPs could contribute to feeling overwhelmed and disorientated. R-N02 had worked in research for 7 years and recalled, “I had to find out things for myself.”In contrast, R-NMAHPs who had moved into the role more recently were more likely to have received more extensive and organized inductions, training and mentoring.People said, “Are you enjoying it?”, and I thought ‘actually, do you know what, I don't know’. Because I don't know whether I'm doing it right, I don't know whether I actually know what I'm doing. I didn't. I think it took 12 months. […] I just had to ride it out. (R-N06)At first, clinical research often felt like a “different world” to that of clinical practice. Some adjusted quickly, but most found that it took several weeks, months or even years to feel more comfortable and confident in a research delivery post. During this time, some R-NMAHPs contemplated leaving the post and returning to a more familiar clinical (non-research) role.[A colleague said] “You need to take some time to realize that you’re not a clinical physio anymore. That’s not what you’re employed to do. You’re a research physio and your job is to carry out the research to the best of your ability.” And sometimes that involves, for example, having a straight face, not engaging in conversation while somebody is carrying out a test. Not giving feedback on the results because it might skew the data in some way. (R-AHP02 [physiotherapist])So when you go into a clinical setting as a research nurse, obviously your primary role is to, as you say, collect data for the study, recruit participants for the study. But of course you go in there with a nurse perspective. So a lot of what you have to do is perhaps adapt to a different role. And that's the sort of greatest challenge, I think, really. Understanding that you're not part of the clinical team. (R-N07)Having good relationships with others, including patients and non-research clinical staff, was an important component to this adjustment.Some of the skills that you use in midwifery, you really, really need [… Like] communication skills. (R-M02)The patient information leaflets come from the trials. But it’s your own communication skills it comes with. I’ve been nursing for 15 years now, it’s something you learn to do, and you work off their cues, their verbal cues, their nonverbal cues. And you talk in a language that they can understand. […] So, it’s all about the conversation that you’re having with the patient. (R-N01)R-NMAHPs often spoke about aspects of their role which had endured, as well as what had changed. Continued patient contact and good communication skills were often highlighted as important, with the role of the R-NMAHP vital in bridging between the documented aims of the research  and actual patient understanding.A lot of transferable skills came over with me that I didn’t realize would be as beneficial until you actually have to do it. […] If you need to take some bloods, you need to take them there and then. (R-N01)Various clinical skills were highlighted, enabling research to happen more quickly and without relying on other clinical (non-research) staff to help.Some R-NMAHPs expressed concerns about de-skilling through a research role. Those who held two or more posts, such as a second job which was clinical (non-research) or undertaking bank shifts, suggested this could help maintain clinical skills. However, for some, it remained challenging because of rapid changes in healthcare technologies and practices in use. The sense that they were losing their clinical skills, or that others thought this about them, could be distressing and contribute to feeling that they were no longer a “proper” nurse, midwife or AHP.We don’t de-skill, you learn a new set of skills. […] It’s just developing more and I don’t believe that those skills that you had there already are lost, you build on them. (R-N02)You’ve still got all those nursing skills [like interacting with patients], we’re just probably utilizing them in a different way. (R-N04)I’m a physio with extra skills […] rather than no longer a physio, who can do less. (R-AHP04)Others rejected this notion of de-skilling. Instead, they saw these skills as becoming dormant or their role as evolving as new skills were acquired.I was ready for something new. […] [It] was just a natural progression for me and I think that obviously there are many transferable skills. (R-N09)Many R-NMAHPS were drawn to research roles in search of a “change”, “challenge” and something “new” or “different” to do. Some moved into a research role seeking more family-friendly work patterns, highlighting an intersection of both professional identities and personal parental/carer identities in the career move. For some, becoming a research nurse, midwife or AHP meant moving into a new speciality at the same time as adopting a new role. Others were keen to stay in (or return to) a clinical area they had worked in before but to try a different role and develop new skills.I can remember people saying, “Oh, didn't you use to be a nurse”, and things like that to me, when I met them, still on the ward, but not dressed in my uniform. So yes, it does have an identity impact, definitely. […] For some people, maybe from being young, they've always wanted to be a nurse when they grow up, to then suddenly be offered an opportunity to not look like a stereotypical nurse, or not be on a ward in a clinical area, might then make them think 'yes, well I have lost a bit of identity'. (R-N10)A lot of people just thought ‘well I could do that, sitting in an office at a desk’, so that was their interpretation of what a research midwife would be. There was quite a bit of negativity. (R-M04)We still do face that ‘we don’t have patient contact, we’re not proper nurses’. (R-N04)Their own or others’ perceptions of a changed professional identity was sometimes experienced as a loss or threat. This was often articulated as feeling no longer a “proper” nurse, midwife or AHP. These concerns sometimes faded, but other times they endured and gave rise to considerable anxiety for some participants. This threat to professional identity sometimes stemmed from comments or actions from clinical (non-research) colleagues and patients/participants.One of the managers there said to me, “Oh, so somebody who had come and done their placement with us was training to be a speech therapist, then went on and did research, and I thought, oh, what’s the point; we’ve completely wasted all of our efforts doing clinical training with this person, ‘cause she’s not going to be a clinician.” And that really stuck with me. (R-AHP03 [speech and language therapist])Sometimes R-NMAHPs had heard or seen challenges to professional identity made about others which they then internalized.If somebody says to you, “What do you do?” I now say, “I’m a nurse by background.” That’s how I’ve started to address it, because I recognize I don’t function in the typical view of what a nurse does. And partly that makes me a little sad sometimes, ‘cause I think I always loved being a nurse and I am a nurse, in my heart I’m a nurse. But actually, that’s not what I do on a day-to-day basis now. (R-N11)Pre-empting difficult exchanges, some developed strategies such as using a “stock response” when asked about their job.I kind of thought the research nurse job was, to be honest, a job that somebody in their late 40s, early 50s, who’s worked a hard career and wants a bit of an easier job, that was my honest perception. Now that I’ve worked in that area, and particularly in the early phase clinical trials, I know that is not the case at all and it actually is quite difficult work. (R-N12)A move into research could prompt people to confront and re-evaluate their own assumptions and judgements about R-NMAHPs and their activities.My background in nursing has helped, for the language mainly. I understand when they’re talking about tumours and things like that, but it’s been a massive learning curve. It’s been really, really interesting and I still love it, and I’m so glad that I made the change. (R-N01)If a patient says to me, “Oh, I haven’t had a cup of tea,” or whatever, then I’ll go and get one rather than ask somebody else to go and get one or if they want to go to the loo [….] Just because you’re not working there clinically doesn’t mean that you can’t help out a little bit. (R-N5)Emphasizing the ways in which they continued to “work” as a nurse, midwife or AHP and use their expertise could help mitigate a sense of losing their professional identity. This included using their clinical skills and good patient communication.Researchers use the word “participants”, and they are participating but that doesn’t stop them being our patients. […] I still tend to call them patients. […] I think that might be the nurse in me, maybe. […] They’re patients first, participants second. (R-N13)The way that R-NMAHPs perceived individuals as patients or participants also highlighted a complexity in their own co-constructed sense of professional identity.Spanning the boundaries of their role, however, could also lead to some confusion about its limits. The blurriness of the boundaries could present difficulties for R-NMAHPs but also for patients/participants and for (non-research) clinical staff. Recognizing the differences in roles and learning how to negotiate them in their research post sometimes required un-learning habits and practices they might easily “slip into”. This was further complicated by some R-NMAHPS holding two or more posts and so might see the same individuals when in their clinical (non-research) role and in their research NMAHP role.alongside patient care.I am a nurse, and my job is to make sure that my patients are well supported, well cared for, that I have considered their whole life, given holistic care. And it just so happens that a clinical trial is the vehicle to do that. […] So I’m the nurse, not the research nurse. (R-N12)Whilst some experienced a threat to or loss of their professional identity, others felt the move into research had enhanced it. They brought skills, knowledge and values from their previous experiences into their research roles and continued to use them on a frequent basis to deliver research It is so nursing-biased, that you do feel like you’re blazing a trail for another profession because you are, you have to fight a little bit for recognition. (R-AHP02 [physiotherapist])Some research midwives and AHPs emphasized it was not only nurses who could work in research delivery roles and saw themselves playing a role in diversifying the workforce.I remember clearly thinking, “I don’t know anyone, I don’t know who these people are.” I remember meeting the trial coordinators, PhD students, the PI and the CI, and I remember thinking, “I just don’t know where to place these people.” (R-M08)A move into research delivery meant R-NMAHPs also positioning themselves in relation to new individuals, groups and organizations of the research infrastructure, including study principal investigators (PIs), chief investigators (CIs), clinical academics and study site coordinators. R-NMAHPs' relationships and communications with these research colleagues varied—depending on their work settings, employment context and the studies they worked on—with continuums of close to distant relationships, and frequent to rare communication. Working with research colleagues could highlight career progression and different pathways to R-NMAHPs, including independent researcher roles. However, research colleagues could also be felt as another group to which R-NMAHPs felt uncertainty and ambiguity about belonging. Some R-NMAHPs described situating themselves as working alongside and between, rather than necessarily within, these different groupings.I found that when you go and you discuss at the higher level with academics and staff, […] some of them they seem to be less receptive of what you’re saying after you mention the “nurse” [part of your background]. I’ve even been advised to ditch the “nurse manager” from my title and just to be a “research manager”, just to be able to talk to a variety of people. (R-N02)Some R-NMAHPs felt that their professional healthcare backgrounds were viewed dismissively by academic and other research colleagues, which hampered their working relationships. R-N02, who led a team of research nurses, explained:You will meet so many quiet nurses in this hospital and you wouldn’t know anything about their achievements because we are not trained to do that, and probably has to do with both the job [nursing] and the gender. We don’t go out and shout loud what we’re doing and what we can do and what we’ve achieved. (R-N02)R-N02 suggested that perceptions of the nursing profession and behaviours such as downplaying achievements were interwoven with issues of gender, and that this dynamic could also affect working relationship for research nurses with other research colleagues:I want to make sure that I'm properly integrated within their [clinical] team, so they don’t just see me as a research midwife but I'm actually a midwife. And they’ve tried to put me in a uniform as well to help with that. (R-M03)Those who had typically worn uniforms as clinicians  often saw wearing a uniform in their research role as helping maintain their professional identity and status in the eyes of clinical colleagues and patients. Uniforms could facilitate rapport and trust by communicating that R-NMAHPs are knowledgeable about clinical and healthcare.When I started, I was told it was a non-uniform job. But I could wear a uniform if I wanted. So because I was struggling with not being [laugh] a nurse any more, I did wear my nurse's uniform for a very short while. But obviously became mistaken for a ward nurse the whole time. So I went into non-uniform pretty quickly. (R-N14)Although continuing to wear a uniform helped some R-NMAHPs feel a sense of continuity with their clinical background, it could also lead to confusion.not wearing uniforms.The reason that we don’t wear a uniform is that we are seen as separate to clinical work and clinical staff, and I think that does help […] There's always that thing about is a uniform a barrier, or is it an identifying professional type of outfit; I don’t know. (R-N15)When I put my uniform on, I feel more of a sense of responsibility to the unit and I feel like I could be called on at any time. So it’s almost a conscious choice sometimes to not wear a uniform, and therefore, can’t be called upon to do anything. That sounds terrible, doesn’t it? ‘Cause I do value what they’re doing, and I have my uniform in the drawer ready to go, if it was needed. (R-N11)Some felt it was important to distinguish themselves from clinical staff by A day where they’re working full time research and then the next day they’re working clinically, or it might be that they work a Wednesday morning in the research office but then lunchtime they change into their uniform and they are working clinically. So I make it quite clear when you are doing which role. (R-AHP05 [physiotherapist])[Uniforms] does help with our team because actually sometimes they encounter families in both capacities, both as a bedside nurse and as a research nurse. […] We have to be very careful that we don’t make them feel coerced because you’ve suddenly gone in with a different ‘hat’ on. (R-N11)For those who held a clinical (non-research) post or took bank shifts in addition to their research post, the use of uniforms could help set the boundaries and expectations of each role to patients and clinical (non-research) staff whom they saw in both capacities.I don’t wear a uniform. No, there doesn’t seem to be any confusion. But I’m still a midwife […] It says on my badge and they [patients] can still ask me questions. (R-M04)The absence of a uniform (such as tunics/scrubs) could differentiate those in research from clinical (non-research) staff, whilst wearing an identity badge could still affirm their professional affiliation.I don’t really like the idea of a uniform in general. But I think it makes people identify with who you are straightaway. ‘Cause if I’m just dressed like this and I walk up to someone, and maybe you’re not listening or, and I say “I’m—”, they might miss that I’m a midwife, and they can see my badge, but they think ‘who is this person?’ (R-M05)However, others felt that an identity badge was too subtle or insufficient for the complex task of communicating professional identity to themselves and others.and differentiate them as working in research. A research-specific uniform, or multiple uniforms relating to different grades and roles within research, could visually highlight the presence of research in the clinical environment and help normalize it for clinical (non-research) staff and patients.I know in some places research staff don’t wear uniforms but I feel quite strongly that we do wear uniforms because I think that I’m a nurse and in fact in the past we had lots of discussions with my manager at the time about perhaps we all just wear the same uniform and it’s a specific research uniform. And I’m a nurse and I’ve trained to be a nurse, I’m a Sister, and I don’t want that taken away from me because that’s how I identify myself and that’s what I want to be. […] Now we’ve got the CNS [clinical nurse specialist] uniforms [in my team], the doctors know that we’re not part of the ward team […] so that’s actually helped quite a bit. But I do feel quite strongly about uniforms because I think it identifies us. (R-N04)And our uniform is different. And they will ask, “Oh, what's this uniform, what do you do?” […] Because there are, because our colour is grey. So now there are lots of grey uniforms you can see around. (R-N08)I think we're in uniform more so for the cohesion, so people can actually look at us and be like, “Oh, they're part of the research team” [at our Trust] as opposed to anything else. (R-M03)For those R-NMAHPs who wore uniforms, or expressed the wish to do so, there were different views on how the style/colour of a uniform could denote their HCP backgrounds It’s the psyche of nursing and ward work and hierarchy, and I can see why that works on a ward. In a ward environment, you need to know who’s doing what. […] Because the people who are in research have come from that clinical background, it feels like that’s all that they know, so they replicate that in their own behaviour. (R-AHP02 [physiotherapist])Some AHPs suggested that uniforms were less important to their sense of professional identity compared to nurses.We all wear the same uniform, so irrelevant of profession, we all wear grey tunics in research [at our Trust]. And I think it's about trying to sort of, for me, reach the rest of the Trust and say, “Actually, grey doesn't mean nursing, grey just means research, and actually all of us can contribute in this way.” (R-AHP04 [physiotherapist])When I started, I had a conversation with somebody quite high up, who asked for my opinion about what allied health professionals should wear, because they had a set colour with a set trim for different levels within research nursing, and it worked for the nurses, but if you go in as something other than a nurse what do they put you in? I gave an opinion, I was told that they were thinking about it, it’s now nearly two and a half years down the line, and nothing has happened. And I am currently wearing the uniform of a) a nurse and b) a band lower than I am, because they don’t know what to put me in. […] So, I’m in an environment where there’s not a lot of people like me, and I’m dressed in something that is me masquerading as something else. (R-AHP02 [physiotherapist])Once working in research, however, and particularly in environments where research nurses were the main research delivery workforce, uniforms could become more salient to R-AHPs. There were different views on whether the same uniform should be worn by all R-NMAHPs in a team/organization. A research-specific uniform could signal a shared identity in research delivery, but for some R-AHPs, it masked different professional backgrounds that they felt mattered.The clinical trials officers [CTOs] aren't allowed to wear a uniform because they're not a nurse. And that's difficult. They want to wear a uniform and I can see why. And they're going out and doing exactly the same job as me. And it's just as clinical. So personally, I think it would be nice if we all had the same uniform […] some sort of shared identity with the CTOs. (R-N14)In settings where the research delivery workforce included those who were not NMAHPs by background, the question of uniforms raised additional uncertainties. R-N14 wore a clinical nurse specialist uniform and felt “it means something to patients”, but her non-NMAHP research colleagues did not wear a uniform of any type.I've heard of [employers of research midwives] calling them “associates” and then they've [laugh] got “(midwife)” in brackets. Which I just think is a really bizarre thing to do. I'm not sure if it's helpful for them. It might be helpful for them in situations like that [where clinical colleagues might ask a research midwife to help with patients], but you are still a midwife, you're just a different kind of midwife. (R-M05)An added complexity concerned job titles. Although R-N14 self-identified as a research nurse, she was technically employed in her current post as a “clinical trials officer”, with this title giving no explicit mention of her nursing expertise—and despite her uniform denoting it. The omission of an individual’s professional identity in a job title was sometimes described as having practical advantages  but disadvantages in terms of camaraderie with clinical colleagues:nurses, reflecting assumptions about the typical background of the research delivery workforce:I looked for those [research nurse/sister job advertisements] and looked at the person spec and what they were asking for, I couldn’t see any reason why as a physio I would be any less able to do that job than a nurse. I mean I think sometimes it can be quite study dependent. (R-AHP02 [physiotherapist])Other times, a job title specified a different professional background to that of the actual post-holder. R-M06 was a midwife and R-AHP02 a physiotherapist, but both were officially employed as research I believe it really poses a problem to the [research nurse] workforce having such a huge variety. It is difficult enough to demonstrate what we do, to raise our profile and show our worth—having a multitude of titles does not show how valued the research nurse role really is. […] We all know the value but without evidence our roles are likely to be  swapped for lower levels, grades and those without professional qualification. (R-N03)There were many variations of job titles for those employed in research delivery. R-N03 named six she knew of within her organization and added that there are “many more job titles across the country”. She also saw the breadth and ambiguity around job titles as a problem:The research nurse role is relatively well-established when compared with the more recent development and growth of similar roles in, for example, the allied health professions. Nonetheless, research delivery roles of NMAHPs are emergent, and their shaping is ongoing. The ways that R-NMAHPs articulate their professional identities  relates to and draws upon the wider context and groups of people whom they work with, for or amongst. This includes, but is not limited to, other R-NMAHPs, clinical colleagues, research colleagues, patients and the public. The sense of alienation and rejection from their clinical colleagues that R-NMAHPs sometimes describe, and their own internalized concerns about this, highlights how undertaking research delivery roles is still seen as a move away from or out of the caring profession—despite attempts to change this perception. Patients/participants can inadvertently reinforce these messages too.. [.  have been identified as a new cadre involved in multiple stages of the research process [Our study builds upon the call by Tinkler et al.  to furth. [.  d process . The rec process . With ou process . As demoThe approach adopted in the United Kingdom of developing and professionalizing CRPs to expand health research contrasts with the approach being undertaken elsewhere. In a United States study, Jones et al.  highlighwithin and alongside the context of patient care, and why R-NMAHPs are most suited to facilitate this, are ongoing. As R-N03 described, it is both well known  and difficult to demonstrate (“without evidence”). Some elements of the value are challenging to calculate—for example, R-NMAHPs often report that patients/participants ask questions or request advice during research encounters that, as qualified and experienced HCPs, they are able to respond to appropriately. The value of this is not only how often these opportunities to further support patient/participant health occur, but also whether research opens up additional or more timely opportunities for such topics/questions to be raised that might not be aired with (non-research) HCPs, and what benefit this gives.The question of what added value comes from a research delivery worker having professional NMAHP qualifications is a complex one, grappled with in different ways by the R-NMAHPs in our study. Efforts to demonstrate why it is important that health research takes place caring with their research abilities, whilst others questioned whether professional backgrounds were necessary. These uncertainties may reflect the realities of some study activities where NMAHP expertise is less significant and referral to clinical colleagues if patients/participants have queries may be sufficient. Yet it may also reflect the chronic undervaluing of their work that many R-NMAHPs have experienced, especially those who have worked in the role for many years. Whilst some study participants expressed uncertainty over the value of their nursing, midwifery and AHP backgrounds to their research roles, all participants demonstrated ways in which their backgrounds had been an asset that was not available to non-HCP equivalents.As our data show, the question of whether it is important that those delivering research are NMAHPs is complicated by the variety of views R-NMAHPs themselves hold. Many felt it was important that the individuals delivering research to patients/participants have HCP backgrounds, and that their roles appropriately integrate elements of their The experiences and views of patients/participants about R-NMAHPs facilitating their research participation have not been explored in detail to date. This presents another avenue through which it might be possible to elicit whether, and how, the professional backgrounds of research delivery staff matter, and to compare these insights with views on non-HCP research delivery staff. As described, some R-NMAHPs recognized that there is a lack of public understanding about their roles and that what the role entails does not align with the public image of NMAHPs. This may mean that patients/participants are not confident or aware of the benefits derived from R-NMAHP knowledge and skills. Raising the profile of R-NMAHPs to the wider public and to patients in general could not only expand understandings of modern NMAHP careers but also increase recruitment to studies and gains from the added value that those with NMAHP backgrounds can provide. This is timely, as R-NMAHPs around the world contribute to the prevention of disease and promotion of health—for example by recruiting patients to clinical trials and providing support throughout the trial, contributing to the development and testing of new drugs including the new vaccines for COVID-19 and, more broadly, delivering the interventions that will ultimately improve patient care and population health.Our study sample did not include those who had explicitly left jobs as R-NMAHPs at the time of interview, although some interviewees had moved away from working predominantly in research delivery to become more independent researchers. As such, the experiences of NMAHPs who have left research jobs have not been included in the study, although these would likely make an interesting addition and help elucidate whether the topics we discuss  might contribute to their decision to leave in addition to other factors, as identified by Boulton and Beer .The interviews for this study were carried out between December 2017 and July 2018. Since then, a number of NIHR-driven initiates have supported the professionalization of the CRP workforce, such as the development of the CRP Directory. Whilst this wider research delivery context has changed since the interviews took place, there were glimmers of recognition of CRPs  as an emerging threat or complication to the ongoing establishment and progression of the R-NMAHP workforce. Our analysis and discussion embeds the data in this wider landscape, and highlights a need for further research. Whilst including CRPs in the sample could have provided an interesting dataset to explore alongside the experiences of R-NMAHPs, we suggest that willingness of R-NMAHPs to participate in the study could have been compromised if our recruitment approach had implied a lack of awareness about (or disregard towards) these differences, which previous research demonstrates as meaningful , a strength of our study is the diversity of the sample; for example, our inclusion of nurses, midwives and AHPs has presented opportunities to consider similarities and differences in experiences between the groups. In some cases, participants themselves suggested differences might be based on HCP professional norms and values (such as around uniforms) or factors such as how long research delivery roles had been established in their respective professions. It also allowed for profession-specific expertise and skills utilized in research delivery to be considered, as well as those held across professions (such as good communication skills with patients), when reflecting on the question of the value of NMAHP backgrounds to the role.Moving into a research role can mark a significant shift in working practices and responsibilities for nurses, midwives and allied health professionals. Part of this adjustment involves this cadre recognizing that how others perceive them may have changed quite dramatically, impacting how they perceive themselves. This sense of changed identity can draw on real, anticipated and imagined interactions and attitudes of clinical colleagues and patients, as well as the general public whose archetype of “the nurse”, for example, may look very different to the work of a research nurse. For some R-NMAHPs, a move into research may also elicit their own previously held negative assumptions about the role and the motivations of those who occupy the posts. They may have a sense of insecurity or feel that they have “lost” something or diminished their professional identity in some way by moving into research delivery. At the same time, these research roles are a vital part of the infrastructure supporting health research, and R-NMAHPs often become advocates for the value of these endeavours to yield patient benefits. A sense of both loss and pride regarding their roles highlights how R-NMAHPs occupy a difficult space in terms of knowing and articulating their value. Uniforms, name badges and titles are co-constructing markers of professional identity, and the tensions articulated about these highlight the difficulties they face individually and collectively in bridging both the “research” (delivery) aspects and the “professional” (caring) aspects of their roles.As boundary spanners, R-NMAHP roles connect within and between important groups in research activity. This is an essential part of the job, and their familiarity with clinical working is often an asset; for individuals, however, it can provoke anxiety and a sense of not completely “fitting in”. Comments from others questioning whether R-NMAHPs are “still” nurses, midwives or AHPs can undermine how individuals in the roles might prefer to frame their professional identity, relegating it to the periphery. This finding resonates with work by Gill , demonstOur analysis of R-NMAHP professional identities highlights how individuals themselves try to negotiate, reconcile and embody an answer that pulls components of “research” (delivery) and “professional” (caring) NMAHP roles together. The vast array of backgrounds, skills and knowledge of R-NMAHPs, and the diversity of studies they work on, mean that the value they bring is highly nuanced. However, the landscape of health research means there is also a need to articulate this on a collective scale to secure and advance R-NMAHP careers, particularly in light of NIHR-driven efforts to professionalize CRPs in the United Kingdom. By unpicking the complex boundary-spanning role as it translates into a professional identity, the necessity of existing initiatives to support R-NMAHPs are reiterated, and there are opportunities to identify additional ways to better support them while acknowledging the ever-changing landscape of health research in which they operate. This includes not only support for R-NMAHPs as they undergo adjustment into the role but further opportunities for professionalization, training and developing career pathways alongside (and not at the expense of) other research delivery workforces such as CRPs.


Covid-19 has prompted a surge of data visualizations that have been published for public consumption, yet, many have not had broad appeal or may have not been well-understood by laypeople. A data storytelling platform called Flow Immersive has been created to successfully engage both laypeople and experts in understanding complex information. This tool integrates emerging technologies  with a multiplatform, multiuser publishing approach. From October 2020 to December 2020, Flow’s Covid-19 AR videos captured 9 million  views, and have been used in multiple professional presentations. This paper documents the journey from development to deployment, and some user feedback which all led to breakthroughs in scalability and higher levels of engagement. Flows) have been presented, and the impact of these various presentations.Design is the thoughtful organization of resources to accomplish a goal. It is both a process  and a product . During and the trees. Flow was designed so that data points do not disappear and reappear but instead move from one perspective, or graph, to another. Lastly, the use of steps allows participants to follow a linear storyline. At each step, participants can click on dots (data points), and pull-up additional details that aid in understanding a specific attribute. These feature and design decisions make the tool highly interactive and profoundly extensible.While 3D is one feature, there are other design considerations made in the development of visualization tools. One consideration is utilizing scale to show the “zoomed out” big picture view, and then allowing users to then “zoom in” to the details. One can see the forest As of this writing , the world is still inundated with daily, new content aimed at informing the general public about Covid-19-related topics. These visualizations can miss their mark by sometimes being confusing, or misunderstood by the layperson see . We haveThree-dimensional data visualization tools have been implemented for augmented reality (AR) and virtual reality (VR) in several domains such as civil engineering, industrial engineering, construction, and science in general . SimilarImmersion can be linked to the number of dimensions available to a viewer . We predFlow Immersive, the data visualization design tool that was founded in 2016, enables users to more effectively communicate complex information and data stories to both expert and non-expert audiences.Flows, can be published as videos, images, GIFS, standalone visualizations, or immersive multiuser experiences. Additionally, these simulations work natively in a web browser .To date, Flow Immersive has created and published 17 interactive, 3D, Covid-19 data simulations that work across the following platforms: computer screens, mobile phones, VR headsets, AR mobile, and AR headsets. These simulations, called Flow’s immersive and interactive data stories may be a better method for guiding non-experts to understanding the insights in the data. The “story” is about how different states have different predicted peak hospitalization dates. Here, we explore the first signs of the curve flattening in the United States, but history forewarned us with the 1918 Spanish Flu that the second and third waves caused more deaths than the first wave (not pictured here). The figure shows predictive models from the Institute for Health Metrics and Evaluation (IHME). Highlighted in this data story are predicted peak hospital bed utilizations. These differ depending on the individual state in the United States.Over the course of the 11-month timeframe since we began publishing Covid-19 data simulations, many design decisions were made intending to manage the tension between balancing reach  and engagement . Here, we chronicle some of that journey from the Covid-19 simulations introduction in late January, 2020 to the simulations current usage – as of early January 2021. Magic Leap One). Although the GIF duration was only 1 min, those in-headset spent an average of around 3 min exploring the content. The difference in terms of reach is illustrated in In general, we saw that as the presentation format becomes more immersive , the reach  decreases and engagement  increases. Similarly, as the format becomes simpler and more accessible, the reach of the visualization increases and, yet, the engagement decreases. As an example, one of our early visualizations was made into an animated GIF and viewed over 310,000 times , whereasvia viewer feedback, it became clear that the narrative is what really drives viewer engagement, rather than the visualization itself. The decision was made to rapidly record an AR session and to “walk the viewers through” the content with speech and the storyteller’s gestures. The vast majority of responses were positive and the number of views on LinkedIn quickly reached 2,000 in a non-advertised manner  to engage with, present, and really understand data. Epidemiologists often have the right information, but if it is not effectively communicated, it loses public health value. e design , and we Flow’s uses, a survey was sent to 40 people in March 2020. A total of 16 consented to evaluate the tool with the survey consisting of open-ended questions. One of the participants stated that they did not experience Flow with Covid-19 content and, therefore, was not included below. Of the 15, nine participants stated that they had specific Covid-19 questions they wanted answered within Flow. Among the ones that had prior Covid-19 questions in mind, the most common were: comparison by state (latest data and over time), geographical vaccine distribution, cities with high infection rates, comparison with other countries, and the results of hypothetical cases where stricter measures were taken. To better understand Flow is different from other, more traditional and non-interactive visualizations, two clusters of answers emerged: (1) quality of interaction and (2) learning. Users found Flow to be a rich experience thanks to the storytelling aspects with personalized experiences. Some illustrative replies are listed below:When queried how 1. Quality of Interaction:“Made me watch it longer than I would have, more memorable.”Flow chart immerses you in the content!”“A “It was nice to see the graphs in such an immersive way.”2. Learning:“Much richer learning experience.”“More digestible data can be one screen.”“It simplifies my understanding.”“Greater understanding, easier to remember.”“See data in a new way.”“Liked how the time aspect was displayed by real-time graph evolution.”Flow helped them, participants’ reactions were uniformly positive. They found Flow to be visually pleasing, entertaining, and easy to use in general:When asked how “Visually engaging”“Great graphics”“It’s entertaining more than 2d graphs”“Visualizations were also clear and easy to read.”Lastly, regarding the future of Flow Immersive, some responders asked to see its integration into other platforms, like multi-user AR. We are exploring how to get all users interactive in a multi-user space. They also asked for extrapolations and predictions, and the ability to direct attention to certain local data points:“Integrations into enterprise data visualization platforms with tools to create and publish stories with the data.”“Would be cool for two people in different locations to virtually occupy the same AR space.”“If you speak about certain data points have those visually ‘flash’ to quickly help viewer find them.”It has been anecdotally reported that some people hold the misconception that by simply putting data in a 3D space, major insights will instantly be grasped by the user. In fact, the affordances of 3D can lead to cognitive overload and confusion when the content is not well-scaffolded . NonetheFlows on flat screens, or in AR mode on mobile devices, with time, users will be able to create and then experience the data in a more immersive manner.The future for Flow Immersive is less about self-produced content to draw interest, and is more about empowering anyone to be able to tell their own data story with the editor. It is data democratization. With the recent wave of more affordable AR and VR devices, viewing 3D content is becoming more prevalent. A user going into a 3D environment to simply look at 2D content could be missing rich and vital information. VR headset adoption is slowly picking up. While the majority of users view via other formats. The tool shows promise in terms of engagement and understanding, especially when people are “immersed in data.” This is because as the format becomes more immersive, the engagement (time in the experience) also increases. The exponential increase in use afforded by the TikTok platform was unforeseen, yet exciting. The novel technology of Flow is being increasingly used by stakeholders and the wider public to understand, and to make decisions about Covid-19. These sorts of data visualizations hold promise for all types of data and may arguably result in increased data visualization literacy over time.This article introduces Flow Immersive – an interactive multi-user, multi-dimensional, multi-platform data storytelling application. During the Covid-19 pandemic, it has been used by millions to better understand disease transmission. Although not everyone had the opportunity to experience the simulations in emerging AR or VR, the tool still managed to capture wide audience attention The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding authors.Written informed consent was obtained from the individual(s) for the publication of any potentially identifiable images or data included in this article.MD: tool design and implementation and overall writing. MK: literature writing and reviewing. MJ-G: reviewing and supervising. All authors contributed to the article and approved the submitted version.MD is the cofounder of the company Flow Immersive.The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


Older adults have been disproportionately impacted by the COVID-19 pandemic, which has led many to isolate during this time. Technology enables people to remain connected, however little is known about how older adults have used technology and the impact it has had on their mental health and connectedness. This study was to explore how the COVID-19 pandemic has influenced older adult mental health and social connectedness, with a particular emphasis on how technology has played a role. One-on-one interviews (N=29) were conducted with adults aged 65+  via phone/Zoom. Participants were asked open-ended questions about the impact social distancing has had on their quality of life, health, and social connectedness as well as their technology use to remain connected. Findings highlight the mental health stressors experienced by older adults during the pandemic, as well as much resiliency and innovation. In speaking of the isolation and its effect on her mental health, one participant said, “I thought fighting cancer was bad, but this is worse.” Nearly all of the participants had used technology in some form to remain connected to others, which the most common being a smart phone to call, text, and video-interface. One participant commented, “You can’t beat an iPhone. How in the world could we ever live without an iPhone?” Many participants had learned a new technology during the pandemic, such as Zoom. Our findings raise the possibility that technology may be a good strategy for enhancing well-being of aging population amid the pandemic.