Microbial genome sequencing is now being routinely used in many clinical and public health laboratories. Understanding how to report complex genomic test results to stakeholders who may have varying familiarity with genomics—including clinicians, laboratorians, epidemiologists, and researchers—is critical to the successful and sustainable implementation of this new technology; however, there are no evidence-based guidelines for designing such a report in the pathogen genomics domain. Here, we describe an iterative, human-centered approach to creating a report template for communicating tuberculosis (TB) genomic test results.We used Design Study Methodology—a human centered approach drawn from the information visualization domain—to redesign an existing clinical report. We used expert consults and an online questionnaire to discover various stakeholders’ needs around the types of data and tasks related to TB that they encounter in their daily workflow. We also evaluated their perceptions of and familiarity with genomic data, as well as its utility at various clinical decision points. These data shaped the design of multiple prototype reports that were compared against the existing report through a second online survey, with the resulting qualitative and quantitative data informing the final, redesigned, report.We recruited 78 participants, 65 of whom were clinicians, nurses, laboratorians, researchers, and epidemiologists involved in TB diagnosis, treatment, and/or surveillance. Our first survey indicated that participants were largely enthusiastic about genomic data, with the majority agreeing on its utility for certain TB diagnosis and treatment tasks and many reporting some confidence in their ability to interpret this type of data . When we compared our four prototype reports against the existing design, we found that for the majority (86.7%) of design comparisons, participants preferred the alternative prototype designs over the existing version, and that both clinicians and non-clinicians expressed similar design preferences. Participants showed clearer design preferences when asked to compare individual design elements versus entire reports. Both the quantitative and qualitative data informed the design of a revised report, available online as a LaTeX template.We show how a human-centered design approach integrating quantitative and qualitative feedback can be used to design an alternative report for representing complex microbial genomic data. We suggest experimental and design guidelines to inform future design studies in the bioinformatics and microbial genomics domains, and suggest that this type of mixed-methods study is important to facilitate the successful translation of pathogen genomics in the clinic, not only for clinical reports but also more complex bioinformatics data visualization software. Whole Genome Sequencing (WGS) is quickly moving from proof-of-concept research into routine clinical and public health use. WGS can diagnose infections at least as accurately as current protocols , can pread hoc, project-by-project basis, with the resulting product not necessarily meeting the needs of the many stakeholders using the report in their clinical and surveillance workflows.As reference microbiology laboratories move towards accreditation of WGS for routine clinical use, the community is turning its attention toward standardization—developing standard operating procedures for reproducible sample handling, sequencing, and downstream bioinformatics analysis . ReportiThe information visualization, human–computer interaction, and usability engineering fields offer techniques and design guidelines that have informed bioinformatics tools, including Disease View  for explValenstein reports four principles for organizing an effective pathology report: use headlines to emphasize key points, ensure design continuity over time and relative to other reports, consider information density, and reduce clutter , while RWork in the electronic health record (EHR) and patient risk communication domains has also provided insight into not just the final product but also the process of effective design. Through quantitative and qualitative evaluations, research has shown that some EHRs are difficult to use because they were not designed to support clinical tasks and information retrieval, but rather data entry . ReviewsThe COMPASS-TB project was a proof-of-concept study demonstrating the feasibility and utility of WGS for diagnosing tuberculosis (TB) infection, evaluating an isolate’s antimicrobial sensitivity/resistance, and genotyping the isolate to identify epidemiologically related cases . On the ad hoc approach to design, Design Study Methodology engages domain specialists and grounds the design and evaluation of the visualization system in tasks—in this case TB diagnosis, treatment, and surveillance—as well as data. It is this marriage of data and tasks to design choices, informed by real needs and supported by empirical evidence, that results in a final product that is relevant, usable, and interpretable.We undertook a mixed-methods and iterative human-centered approach to inform the design and evaluation of a clinical TB WGS report. Specifically, we chose to use Design Study Methodology —an approHere we describe our application of Design Study Methodology to the COMPASS-TB report redesign. Targeting clinical and public health stakeholders with at least some familiarity with public health genomics, we show how evidence-based design can be incorporated into the emerging field of clinical microbial genomics, and present a final report template, which may be ported to other organisms. We also recommend a set of guidelines to support future applications of human-centered design in microbial genomics, whether for report designs or for more complex bioinformatics visualization software.domain specialists in this case as the TB stakeholders—clinicians, laboratorians, and epidemiologists—who regularly use reports from the reference mycobacteriology laboratory in their work.The Design Study Methodology  is an itquantitative results from each of the surveys and the analysis code are available at https://github.com/amcrisan/TBReportRedesign and in the Our research was reviewed and approved by the University of British Columbia’s Behavioural Research Ethics Board (H10-03336). All data were collected through secure means approved by the university and were de-identified for analysis and sharing. Anonymized In the Discovery stage, we first gathered qualitative data through expert consults to identify the data types used in TB diagnosis, treatment, and surveillance tasks; we then gathered quantitative data through an online survey to more robustly link particular data types to specific tasks. This staged approach to data gathering is known as the exploratory sequential model .Our expert consults took the form of semi-structured interviews with seven individuals recruited from the COMPASS-TB project team, the British Columbia Centre for Disease Control (BCCDC), and the British Columbia Public Health Laboratory (BCPHL). The interview questions served as prompts to structure the conversation, but experts were free to comment, at any depth, on the different aspects of TB diagnosis, treatment, and surveillance. We took notes during the consults in order to identify the tasks and data types common to TB workflows in the UK and Canada, as well as to determine which tasks could be supported by WGS data.Informed by the expert consults, we drafted a Task and Data Questionnaire text in  to surveOnly completed questionnaires were used for analysis. For questions pertaining to participants’ background, their perception of WGS utility, and their confidence interpreting WGS data, we report primarily descriptive statistics. To link TB workflow tasks to specific data types, we presented participants with different task-based scenarios related to diagnosis, treatment, and surveillance and asked which data types they would use to complete the task. For each pair of data and task we assigned a consensus score depending on the proportion of participants who reported using a data type for a specific task: 0 for fewer than 25% of participants, 1 for 25–50%, 2 for 50–75%, and 3 if more than 75% of participants reported using a specific data type for the task at hand. Consensus scores for a data type were also summed across the different tasks. Freeform text, when it was provided, was considered only to add context to participant responses.The Discovery stage revealed which data types to include in the redesigned report, while the goal of the Design stage was to identify how it should be presented. We used a Design Sprint event to produce a series of prototype reports, which were then assessed through a second online questionnaire. This survey collected quantitative data on participants’ preference for specific design elements, with participants also able to provide qualitative feedback on each element—a type of embedded mixed methods study design .The Design Sprint was an interactive design session involving members of the University of British Columbia’s Information Visualization research group, in which teams created alternative designs to report WGS data for the diagnosis, treatment, and surveillance tasks. Teams developed paper prototypes  of a comIn the Design Choice Questionnaire text in , we evalDi), i = {1…N} where N is the total number of design choices, R = {1…N} is a raw rank (rank selected by a participant in the study), and P = {1…P} is the total number of participants. In our study, 1 was the highest rank (most preferred) and N was the lowest rank (least preferred) option. As an example, if a design, D1, is always ranked 1 (greatest preference by everyone), the sum of those ranks is P, resulting in a numerator of 0 and a rescaled rank score of 1; alternatively, if a design, D2, is always ranked last (N), the sum of those ranks will be P∗N, and a rescaled rank score of 0. Thus, the rescaled rank score ranges from 1 (consistently ranked as first) to 0 (consistently ranked last). This transformation from raw to rescaled ranks allows us to compare across questions with different numbers of options, but is predicated on each design alternative having a rank, which is why this approach was not extended to multiple choice questions.We used single-selection multiple-choice, Likert scale, and ranking questions to assess participant preferences. For multiple-choice and Likert scale questions, we calculated the number of participants that selected each option and report the sum. For questions that required participants to rank options we calculated a rescaled rank score as follows: To contextualize rescaled rank scores, we randomly permuted participants’ scores 1,000 times and pooled the rescaled rank scores across these iterations to obtain an average score , MIRU-VNTR patterns (88.2%), epidemiological cluster membership (76.5%), single nucleotide polymorphism/variant distances from other isolates (64.7%), and WGS quality metrics (58.8%) . Howevercan be used to correctly perform organism speciation (76.5%), assign a patient to existing clusters (70.0%), rule out transmission events (64.7%), and to a lesser extent were confident TB WGS could be used to identify epidemiologically related patients (58.8%) and predict drug susceptibility (52.9%) (may be able to inform clinicians of appropriate treatment regimens (100%) and identify transmission events (94.1%); however, participants showed mixed consensus toward whether genomic data could be used to monitor treatment progress for TB (47.2%) or diagnose active TB (52.9%).Moving from confidence in their own interpretation of laboratory data types to confidence in the utility of WGS data in general, the majority of participants were confident that information contained within the TB genome  (52.9%) . The majTo examine which data types were being used to support diagnosis, treatment, and surveillance tasks in the workflow, we assigned a numerical score reflecting respondent consensus around each data type-task pair . We founWe also queried participants’ perceptions of barriers impacting their workflow, with the majority of participants (83.3%) reporting issues with both the timeliness of receiving TB data from the reference laboratory and the distribution of test results across multiple documents —a findinEquipped with an understanding of how WGS data might be used in the various TB workflow tasks, we embarked on the Design stage of the Design Study Methodology. A Design Sprint event involving study team members and information visualization experts resulted in four prototype report designs  and variTo drill down and determine which design elements best communicate the underlying data, we isolated individual design elements  and clasWe next developed an online survey, the Design Choice Questionnaire, to assess stakeholders’ preferences for both specific design elements and overall report prototypes. The distribution of public health roles amongst survey participants is presented in both clinicians and non-clinicians. We first examined participants’ preference for specific wording and design elements  and 6B, The findings from the analysis of wording elements  showed tClear preferences were also observed for information design elements, again largely concordant between clinicians and non-clinicians . ParticiInterestingly, while both clinicians and non-clinicians reported similar rankings for most design elements, one element showed an unusual distribution of scores—the visualization for showing genomic relatedness and membership in a cluster. While both groups of participants preferred a phylogenetic tree accompanied by a summary table, which is the current COMPASS-TB control design, the other four options appeared to be ranked randomly, with rescaled rank score close to 0.5, suggesting that none of the alternative options were particularly good.We also had participants rank their preferences for the four prototype designs . While a“the report must call attention [to] drug resistance” and expressed concern that the abbreviation of drug names and/or predicted resistance phenotype could lead to misinterpretation and pose risks to patient safety, stating that “not all clinicians [are] likely to recognize the abbreviations” and “[using the full name] reduces the risk of errors, especially if new to TB”. When choosing how to emphasize predicted drug susceptibility information , some participants suggested shading draws the quickest attention to [resistance]” and that “with presbyopia, resistance can be easily missed and therefore shading affords greater patient safety”, but other participants indicated drug susceptibility, rather than resistance, should be emphasized: “not sure that resistant should be shaded—better to shade sensitive drugs in my view” and “it would be better to highlight what is working instead of highlight what is not working.” We opted to highlight resistance given the low incidence of drug-resistant TB in the UK and Canada, which were the primary application contexts. Some reported concerns as to whether such emphasis was possible with current electronic health records, including “[bolding or shading] may not transfer correctly” and “shaded [text] won’t photocopy well.” which prompted us to test both printing and photocopying of the resulting report.The qualitative responses in the Design Choice Questionnaire raised important points that would otherwise not have been captured by quantitative data alone. For example, the importance of presenting drug susceptibility data clearly emerged from the qualitative responses. Participants indicated that the best likelihood of success will [come] from the ability to draw attention to someone scanning the document quickly”. However, participants’ perceptions of which design choices best promoted rapid synthesis varied. Some preferred summaries in the form of check boxes—“[a] tick box is the most straightforward way to summarize it. Reading a summary sentence will probably take longer” and “the check boxes provide an at-a-glance result”—while others preferred additional commentary —“interpretation is important; but tick boxes alone lack the necessary nuance required for interpretation” and that “tick boxes may cause confusion when clinicians read XDR without realizing that option is not selected. Ideal to add a comment about resistance”. To address this concern we added a “No drug resistance predicted” option to the check-boxes (absent from the survey design options), and included shading elements to emphasize the drug susceptibility result.The issue of clinicians having little time to interact with the report, raised in both the expert consults and the Task and Data Questionnaire, also became apparent in the qualitative responses to the Design Choice Questionnaire, such as “[this data] should not appear in the report. It should only be given to field epi and researchers. Overloading the clinical report would be deteriorating” and “not useful for a clinician”—or because they were uncertain about its interpretation—“cluster detection would be fine for those who already know what a cluster is” and “my patient’s isolate is 6 SNPs from someone diagnosed 3 years ago. What is the clinical action?”.The qualitative responses to Q17  provided“[included] too much information and [were] unnecessary for routine diagnosis/treatment”. However, others felt that the options did not provide sufficient detail and offered alternatives, such as “if you can combine the phylogenetic tree with some kind of graph showing temporal spread that would be perfect. Adding geographical data would be a really helpful bonus too”. This is an area of reporting that requires further investigation and was not fully resolved in our study.Of the design choices for cluster detection, several participants articulated that many of the options, including the control, “distracting; looks like a set of roadworks rather than a microbiology report” and that it was important to “keep it simple”. Their feedback also revealed when our phrasing on the survey instruments was unclear.Finally, participants were candid about those design options that did not work well—for example, of the report design with many graphics , adding the lineage to the Organism section, and adding additional fields to tables describing the sample, and the assay, such as what type of material was sequenced  and what sequencing platform was used.Microbial genomics is playing an increasingly important role in public health microbiology, and its successful implementation in the clinic will rely not just on validation and accreditation of WGS-based tests, but also in how effective the resulting reports are to stakeholders, including clinicians. Using Design Study Methodology, we developed a two-page report template to communicate WGS-derived test results related to TB diagnosis, drug susceptibility testing, and clustering.To our knowledge, this project is the first formal inquiry into human-centered design for microbial genomics reporting. We argue that the application of human-centered design methodologies allowed us to improve not only the visual aesthetics of the final report, but also its functionality, by carefully coupling stakeholder tasks, data, and constraints to techniques from information and graphic design. Giving the original report a “graphic design facelift” would not have improved the functionality, as some of the information in the original report was found to be unnecessary, presented in a way that could lead to misinterpretation, or did not take into account stakeholder constraints. For example, interviews and surveys revealed procedural and data constraints our study team had not anticipated, including the limited time available for clinicians to read laboratory reports and the need for simple, black and white formatting amenable to media ranging from electronic delivery to fax—these findings were critical to shaping the downstream design process. Furthermore, in nearly every case, study participants preferred our alternative design elements, informed by empirical findings in the discovery stage, over the control elements derived from the original report. Our approach also suggested that some participants are not confident in their ability to interpret certain types of genomic data. As WGS moves towards routine clinical use, it is clear that successful implementation of genomic assays will also require complementary education and training opportunities for those individuals regularly interacting with WGS-derived data.Although human-centered information visualization design methodologies are commonly used in software development, it could be asked whether they are warranted in a report design project. One advantage of tackling the simpler problem of report design is that it allows us to demonstrate Design Study Methodology in action and link evidence to design decisions more clearly than with a software product. We also collected data with the intention of applying it to the development and evaluation of more complex reporting and data visualization software that we plan to create. Similarly, others can use our approach or our data to inform the design of simple or complex applications elsewhere in pathogen genomics and bioinformatics.a priori knowledge of the effect sizes  in the Design Choice Questionnaire, making sample size calculations challenging. Had a priori effect sizes been available, the study could be powered, for example, for the smallest or average effect size. To avoid mis-characterizing our results, we have relied on primarily descriptive statistics, without tests for statistical significance, and assert that our findings are best interpreted as first steps toward a better understanding how information and visualization design can play a role in reporting pathogen WGS data. However, when confidence intervals were calculated for the results of the Design Choice Questionnaire, we observed that non-overlapping confidence intervals separated user preferences as well as the deviation from a random score metric that we primarily used in our analysis. We argue the latter is a useful measure for exploratory studies without clear a priori knowledge of effect sizes for proper sample size calculations. Finally, we did not undertake a head-to-head experimental comparison between the original report design and the revised design. While this comparison had been planned at the outset of our project, the results of the Design Choice Questionnaire showed such a clear preference for the alternative designs when comparing isolated components that we concluded there was no need for such a final test as it would yield little new evidence.The exploratory nature of this project brings with it certain limitations. First, our participants were identified through convenience and snowball sampling within the authors’ networks, and thus are likely to be more experienced with the clinical application of microbial genomics. While this is appropriate for the context of our collaboration, in which our goal is redesigning a report for use by the COMPASS-TB team and collaborating laboratories, it does limit our ability to generalize the findings to other settings. WGS is only used routinely in a small number of laboratories, and even if its reach were larger, these may be settings where English is not the first language used in reporting clinical results, or where written text is read in different ways—both of which would affect our design choices. Second, we did not have For researchers wishing to undertake a similar human-centered design approach, we have summarized our primary findings into three experimental guidelines and five design guidelines. These guidelines arose from our experience throughout this report redesign process, but are intended to apply generally to the process of designing visualizations for microbial genomic data or other human health-related information.design around tasks. It is tempting to simply ask stakeholders what they want to see in a final design, but many of them will not be able to create an effective end product because design is not their principal area of expertise. However, stakeholders know very well what they do on a daily basis and can indicate data that are relevant to those specific tasks and can indicate in which areas they require more support. The role of the designer is to marry those tasks, clinical workflows, and constraints into design alternatives. Depending on the tasks and context, many design alternatives might be possible, making use of colour, more complex visualizations, or interactivity. In other situations, such as the one presented here, design constraints limit the range of prototypes that can be generated. Second, compare isolated components, and not just whole systems. Here we use system to mean either a simple report or a more complex software system. Comparing whole systems can overload an individual’s working memory, meaning they may rely on heuristics such as preferences around style or distracting elements, when assessing and comparing full systems (compare against a control whenever possible. If a prior report or system exists, or if there are commonly agreed upon conventions in the literature or field, it is useful to compare novel designs against an existing one. More generally, comparison of multiple alternatives is the most critical defense against defaulting to ad hoc designs and the most important step of our human-centered design methodology.The three experimental guidelines reflect the areas of the design methodology that we found to be particularly important in our data collection and analysis as well as the final report design process. First,  systems . Presentstructure information such that it mimics a stakeholder’s workflow. In this case, the report prioritizes a clinical workflow, and this workflow is reflected in the report’s design through the use of gestalt principles (use emphasis carefully. Here, bolding, text size, and shading were reserved to highlight important data and were not applied to aesthetic aspects of the report design. Third, present dense information in a careful and structured manner. Stakeholders should not have to search for relevant information—a cognitively expensive task (use words precisely. Specific terminology may not be uniformly understood or consistently interpreted by stakeholders, particularly when the designer and the stakeholders come from different domains, or even when individuals in the same domain have markedly different daily workflows, such as bioinformaticians and clinicians. Finally, if using images, do so judiciously. Images can be distracting when they do not convey actionable information relevant to the stakeholder.Our five design guidelines reflect techniques from information visualization and graphic design that we used in an attempt to improve the readability of the report and balance different stakeholder information needs. First, inciples —treatingive task  that canive task . ThroughWe applied human-centered design methodologies to redesign a clinical report for a reference microbiology laboratory, but the techniques we used—drawn from more complex applications in information visualization and human–computer interaction—can be used in other scenarios, including the development of more complex data dashboards, data visualization or other bioinformatics tools. By introducing these techniques to the microbial genomics, bioinformatics, and genomic epidemiology communities, we hope to inspire their further use of evidence-based, human-centric design.10.7717/peerj.4218/supp-1Supplemental Information 1Click here for additional data file.


Older adults with chronic disease struggle to manage complex medication regimens. Health information technology has the potential to improve medication management, but only if it is based on a thorough understanding of the complexity of medication management workflow as it occurs in natural settings. Prior research reveals that patient work related to medication management is complex, cognitive, and collaborative. Macrocognitive processes are theorized as how people individually and collaboratively think in complex, adaptive, and messy nonlaboratory settings supported by artifacts.The objective of this research was to describe and analyze the work of medication management by older adults with heart failure, using a macrocognitive workflow framework.We interviewed and observed 61 older patients along with 30 informal caregivers about self-care practices including medication management. Descriptive qualitative content analysis methods were used to develop categories, subcategories, and themes about macrocognitive processes used in medication management workflow.We identified 5 high-level macrocognitive processes affecting medication management—sensemaking, planning, coordination, monitoring, and decision making—and 15 subprocesses. Data revealed workflow as occurring in a highly collaborative, fragile system of interacting people, artifacts, time, and space. Process breakdowns were common and patients had little support for macrocognitive workflow from current tools.Macrocognitive processes affected medication management performance. Describing and analyzing this performance produced recommendations for technology supporting collaboration and sensemaking, decision making and problem detection, and planning and implementation. For older adults with one or more chronic diseases, maintaining health typically requires continual management of complex medication regimens ,2. TheseHeart failure is one chronic disease with especially complex medication and lifestyle management components. Heart failure affects 5.7 million US adults and 12% of older adults; it is the leading and fastest-growing cause of death in the United States . Heart fInterventions to improve medication adherence have primarily involved educating and motivating the patient, with only moderate effects on short-term and little effect on long-term medication adherence ,17. InnoMedication management is the process of related activities enabling the optimal use of medicines to achieve maximum health benefits with minimal harm for a specific patient . We avoiPatient work is the “exertion of effort and investment of time on the part of patients or family members to produce or accomplish something” . Health-Prior research reveals that the patient work process related to medication management is complex, cognitive, and collaborative, rather than the linear execution of simple, standard tasks. Sensemaking, defined as the deliberate, continuous effort to understand relationships between people, places, and events in order to anticipate their path on which to base actions, is a foundational medication management activity  and is eactions, performed by actors using artifacts, producing outcomes, supported or constrained by the secondary elements of context , timing , and aggregation . Our study expanded the model to better operationalize the actions component of the model as a set of macrocognitive processes, such as sensemaking, replanning, coordinating, problem detecting, and deciding , “You sent her refill in, didn't you?” [daughter of 74-year-old female], and “Can I have a dental exam (while on an anticoagulant)?” [65-year-old male]. These questions implied a concern for “what do I do” more than “why do I do it.” Many patients  also gathered medication information from sources outside the clinical setting  in the ankles or the hands or anything like that. I think it’s the fluid in the heart area that would make the heart beat less.”Storybuilding was a subprocess that enabled the creating and updating of mental models as well as organizing information and communicating one’s mental model to others. A 69-year-old patient retold the story behind her pacemaker insertion:I was seeing a doctor and he had increased my medicine, Coreg, and the more he increased it the less my heart functioned so that’s when they decided they had to...so I came back, I moved my mother, came back down here and, um, uh a doctor put in my pacemaker.In summary, patient and informal caregiver sensemaking (1) combined information gathered from multiple sources including sources outside health care settings and past experience, (2) developed causal models for health events, and (3) produced new or revised mental models often expressed in personal stories.Planning was the practical, prospective translation of instructions into implementable actions under known constraints, with the goal of achieving a desired future state. Generating plans of action provided the “how” of performing generic instructions such as “take Lasix three times a day” in practice.Participants expressed planning as an ambiguous process not well supported by their formal care team. A 74-year-old male patient described the lack of guidance for planning: “There’s, there’s not a, you know there’s not a magic list of instructions that they lay out.” A recently discharged 65-year-old patient similarly conveyed the lack of guidance after her hospitalization: “When you go home, you’re kinda on your own. You’re kinda flyin by the seat of your britches.”As participants recognized changes in symptoms, medication regimen, available resources, and existing constraints, they were continually adapting plans. To exemplify, a 66-year-old patient explained how mixing up 2 look-a-like medications resulted in an adverse drug reaction; consequently, he planned to break a newly prescribed medication in half to distinguish it from other pills. As in this case, action plans often arose from new awareness of constraints (look-a-like medications) based on feedback from implementing a prior plan (adverse drug event). After experiencing severe shortness of breath that led to a hospitalization, an 84-year-old patient decided weight was not a sensitive indicator in detecting fluid retention. He instead planned to use a pulse oximeter to dose his conditional diuretic. He observed nurses using the device in the hospital and saw other patients with the device in the clinic waiting room. Although not directed by his clinicians to use the device, he explained his rationale:No, no one told me, but I know what happens when you don’t have enough oxygen... I don't take any chances. When my oxygen gets down and doesn't come above 96, 95 or 96, I, I consider that a, uh, uh, a push a go button to do something.This plan, however, was potentially unsafe and may have resulted in the diuretic overuse and resultant kidney damage.Planning and replanning often created new routines and leveraged known resources such as pillboxes  or a patYou can put the daily dose in each (pillbox compartment) in advance so you don’t overlook it. Because trying to open half a dozen containers twice a day, is impossible81-year-old male patientSo it’s all right there when he sits at the table where he can get to everything and that makes a difference too. You know that reminds him to do it.Daughter of 80-year-old patientAnticipatory thinking aided planning; projecting into the future possible consequences, constraints, and opportunities that might be encountered when implementing a plan. A 70-year-old patient explained a strategy he created in anticipation of forgetting whether he took his insulin:I’ve le- got a system for that now too anyway... I keep all, it takes ten syringes out of the little bag and I put them in, with the rest of my in-, with my insulin and stuff and if, if I’ve got an even amount that means I haven't taken the morning one, but if I s-, if later on if I’ve got an odd amount it means I didn’t take that evening medicine.Participants placed high value on planning as a method to cope with uncertainty and anxiety. A 67-year- old patient emphasized the importance of filling pillboxes weekly to assure she did not forget to take her medications: “I don’t, I don’t forget that. That’s my lifeline. How do you forget your lifeline?” This and other observations illustrate planning as a method of control over complex medication management requirements.Monitoring involved what participants called “listening” or “watching” for changes. Endsley  and otheProblem detection required “noticing” an anomaly, yet many participants described difficulty in distinguishing between symptoms and the effects of medications. A 68-year-old patient recounted an instance of this confusion when she forgot to take a morning medication: “I really didn’t feel you know that bad. Um, of course it could have been one of those days I was feeling not that good anyway.” Not understanding the expected effects of medications compounded ambiguity, as did the lack of perceivable problem cues. Patients developed their own cues based on experience. Many patients  created a personal “sign” of fluid retention. A 68-year-old woman described hers: “I knew the signs of my congestive heart failure, and which mine is, I might get a little smother some and my irregular heartbeat and a little bit of discomfort in my chest.” An 83-year-old retired physician shared his: “(It is) how much trouble I have getting in my pickup truck. If I'm short of breath after I do that, then, I know that I'm in failure.”Detecting medication administration problems such as forgetting or mixing up medications was important but unlike symptom detection, did not benefit from personal warning signs. Some participants recalled instances when they forgot or took the wrong medication and were not aware until the next administration time. A 68-year-old male patient recounted: “I opened up the little box for my morning pills, the (bedtime) pills were still in there.” Some participants questioned the appropriateness of medication prescriptions and went to the Internet to “follow behind” and “check if it’s right” or validated with other clinicians to verify if the right medication was prescribed.Compared with problem detection, tracking was a longer-term, forward-looking function. Some information that participants tracked was very specific. One patient kept a list of medications he could not tolerate to assure an unknowing clinician did not prescribe them in the future. Another patient tracked refill information  in a self-made chart. Two patients documented when they administered an as-needed diuretic on their vital sign logs to prevent over-administering the medication. One patient tracked the cost of her medications at various pharmacies and switched pharmacies to avoid going into the “doughnut hole,” a maximum yearly limit imposed by the Medicare insurance plan. Patients and caregivers also tracked information in a less purposeful manner or “just in case” it was needed. Some stored all the documents they received from their clinicians or hospital discharges. Information was also tracked as stories, adding to either an individual or shared narrative, as illustrated by the following piecing together of a medication misadventure by a 74-year-old patient, her husband, and a nurse practitioner (NP):Husband: Well now, they give her, I can't even think. He give her one, one time, but that put her back in the hospital... It, it was just a little pill, but...Patient: I lost my arms and legs, the use of 'em. I don't know how many times he's had to get up and pick me up. I, it was once a week.NP: I think I remember that.Patient: What doctor was it? Do you remember?Husband: That one that shocked her heart... It was just four milligram. We took it once a week, but man, it put her down.Some participants assumed the electronic health record tracked their medical information and therefore they did not need to track this information themselves. A 65-year-old patient did not bring a copy of her medication list or the medications themselves to her cardiology appointment and dismissed the need: “They always just get it off there . Nothing has changed.” However, during the appointment several medication discrepancies were discovered.Decision-making processes resulted in a variety of decisions, including calling a clinician, taking or skipping a medication, or modifying behavior . Participants sometimes utilized pattern matching. The husband of a 65-year-old patient explained how his wife (wrongly) matched her usual solution for coughing to her shortness of breath from fluid retention: “I’ll tell you what she does when she had, is having a problem breathing... She’s got on these menthol cough drops... and sometimes she’ll take up to ten or eleven of them.” Participants also used mental simulation in making decisions. An 83-year-old man responsible for the care of his debilitated wife did not contact a clinician when he experienced shortness of breath because he imagined it would result in hospitalization and consequently leave his wife unattended.Making trade-offs was a decision making subprocess that occurred when participants confronted conflicting goals and unclear solutions.I ended up having blood in the urine and this, this, well this creates a problem so, you know, you talk to them and they say drink lots of water, a lot of liquids, you know. Well I drink lots of water, a lot of liquids and what happened is it didn’t stop bleeding right away but it sure filled me up with water. I couldn’t breathe and I mean I had a heck of a time.74-year-old patientParticipant trade-offs sometimes involved going against medical advice. A compromised kidney function required the physician to discontinue a 74-year-old patient’s gout medication. During an acute gout attack, however, she took the discontinued medication, “They (physicians) took my gout medicine away from me and I told (husband), I said you just get that right back... I said if you don’t want to give it to me, I’ll take it from myself and so, so I did.”Due to the distributed nature of the patient care team, coordinating information and activities across locations, actors, artifacts, and time required continual effort. Coordinating enabled and constrained other macrocognitive processes. Reconciling information brought actors and artifacts into agreement by updating one another and identifying discrepancies. For example, an 85-year-old patient described reconciling new medication information with his informal caregiver and a medication artifact: “(when) I know they’ve changed my prescription, I make a note and call her (daughter) and tell her so she put it on her list and I write on my top (of pill bottle).” During clinic visits, medical assistants reconciled the electronic health record medication list with the patient’s paper list, prescription bottles, or memory. Discrepancies were common and not all information was reconciled or shared. An 81-year-old patient stopped taking medications when he traveled but “never discussed it” with his physician. Coordination breakdowns at times stemmed from not reconciling clinician provided information with a patient’s understanding. A good illustration was a 65-year-old man being unaware he recently suffered a heart attack based on information he received at the hospital: “It (heart attack diagnosis) was a surprise cause it, they (just) told me, they told me my enzymes was elevated.”Coordination was also accomplished by managing interdependencies (actions and information) between care team members across time and space. Timing of clinical appointments often depended on the availability of a family member to drive. A pending surgical procedure required an 81-year-old patient to inquire with his cardiologist about when to discontinue an anticoagulant: “They (surgeon) want to know what I need to do about getting the okay to stop the Coumadin.” Participants did not always manage interdependencies effectively. There were many examples of communication breakdowns between care team members. In one example, a 72-year-old woman received the wrong medication from the pharmacy after a hospital discharge. Her frustrated daughter explained, “She (pharmacist) said well they faxed it in, but you still got some on the other one so they ain’t never filled that new prescription that he (physician) called.”Coordination also required negotiating roles, treatment plans, and medication goals. A simple example of role negotiation was the wife of a 74-year-old patient informing the cardiologist she did not need him to refill prescriptions: “I’ll just get him (primary care physician) to do all of his prescriptions.” Roles were also dynamically negotiated between patients and family members. When asked who was responsible for administering her medications, an 85-year-old patient stated, “Well everybody is really. If sometimes, you know I usually get it (medications) myself, but sometimes I’m just so tired I’ll ask (for help).” Patients negotiated medication regimens with their clinicians. A patient who did not like swallowing pills negotiated with her cardiologist to decrease the number of daily pills from 8 to 4. In contrast, some participants omitted, decreased, or increased medication doses without coordinating or communicating with health care professionals. The son of a 79-year-old patient described the medication “tinkering” practice of his father: “He likes to play doctor for himself you know.”The interactions between macrocognitive processes and other elements of the medication management system produced successful and unsuccessful outcomes. An 83-year-old retired surgeon is scheduled for a routine colonoscopy. Written instructions from the endoscopy clinic are given to him by his primary care physician and instruct him to administer a combination of laxatives the day before the procedure.The patient self-administered the laxatives in the morning the day before the procedure. He was anxious about the colonoscopy because he occasionally was incontinent of feces. He did not want to have an accident during the procedure.Hours after the administration of the laxative, he perceived no effect. He decided to administer an extra dose of the laxatives. Later he experienced a large amount of diarrhea and became lightheaded. He perceived himself to be dehydrated and drank several large glasses of water.Several hours after drinking the water, he became extremely short of breath. He called for assistance from the assisted-living facility he lived in. When she saw the patient, the medical assistant immediately called an ambulance. The patient was admitted to the hospital for pulmonary edema and acute heart failure.Expanding the scope and frame of patient medication management uncovered insights into previously unexplored cognitive processes underlying performance. Broadening this lens confirmed the complex, cognitive, and collaborative nature of medication management workflow suggested by previous research. This analysis also provided new insights and implications for design of medication management tools and technologies, summarized in Examining processes at a level above individual microcognition allowed for a theoretical expansion of the actions element of Workflow Elements Model . A limitApplying the expanded framework to heart failure medication management, we found that these cognitive processes were collaborative, with patients, informal caregivers, and clinicians all serving key roles in care ,75,76. SBased on the present analysis and prior research, we discuss 3 areas in dire need of well-designed technology: collaboration enables sensemaking, problem detection precedes decision-making, and planning requires implementation. Coordination is the core of successful team performance  and “wraWhile the majority of work related to clinical decision-support has focused on clinicians in professional settings, our study provided clear evidence that decision-support tools for patients and informal caregivers to use in home contexts are needed. Our results demonstrate that laypeople often make decisions based on their previous experiences and not by comparing options in a risk or benefit type analysis, in agreement with research in other domains ,83. MentImplementing the medication regimen in a patient’s specific life context is challenging. Others have reported that heart failure patients knew “what” to do but struggled with “how” to implement the medication regimen into their daily lives . Having The analyzed research interviews had a broad scope of heart failure self-care, including specific questions about medication management. This breadth made it difficult to thoroughly examine medication management for an individual participant but patterns emerged when examining data across participants. The sample was limited to individuals in one region, with many receiving care at the same US academic medical center. This study did not collect data structured enough to develop quantitative workflow models capable of producing state transition probabilities, that is, the flow from one action to another. Finally, observation data were limited compared with interview data. A recent publication suggests the various methods that can be used to more rigorously study patient work phenomena such as medication management workflow , and howThis study highlighted important new areas of inquiry previously unexplored in patient medication adherence and management research. The collaborative, distributed nature of medication management calls for the application of team models and theories to the understanding of health management behavior. Improving knowledge building, knowledge transfer, and mental models sharing is a promising focus for interventions and technology design. More research is also needed in the area of patient expertise, how expertise is expressed in patient work, and how tacit knowledge develops in individuals and communities through information sharing and experience. Additional research is warranted into assessing the workload associated with cognitive work such as medication management, including better measures of cognitive demands, cognitive resources, and the balance of the two. Of great interest is the notion of articulation work, or the work needed to ensure processes such as medication management can be effectively performed. Articulation work such as managing one’s health insurance and finances to maintain a supply of medication is often “invisible” and under investigated, but a necessary component from a macrocognitive perspective. More research is needed on how to integrate new technology with existing well-functioning artifacts and practices. There is a need for further research using ethnographic methods, cognitive task analysis, and other techniques adaptable to study the work of patients. Methods such as experience sampling methodology or day reconstruction method are needed to understand cognitive work contemporaneously without disrupting patients’ lives, but these methods have their challenges as well, including variability in the depth and accuracy of collected data.


In response to a central drive for evidence-based practice, there have been many research support schemes, setups, and other practices concentrating on facilitating access to external research, such as the Centre for Evidence Based Healthcare Aotearoa, the Cochrane Collaboration, and the York Centre for Reviews and Dissemination. Very little attention has been paid to supporting internal research in terms of local evidence and internal research capabilities. The whole evidence-based practice movement has alienated internal decision makers and, thus, very little progress has been made in the context of evidence informing local policy formation. Health and social policies are made centrally based on dubious claims and often evidence is sought after implementation. For example, on record, most health care practitioners appear to agree with the causal link between depression and mental illness  with suicide; off the record, even some psychiatrists doubt that such a link is applicable to the population as a whole. Therefore, be it through misplaced loyalty or a lack of support for internal researchers/decision makers, local evidence informing local decision making may have been ignored in favour of external evidence. In this paper, we present a practical holistic model to support local evidence-based decision making. This approach is more relevant in light of a new approach to primary health care of “local knowledge” complementing external evidence. One possible outcome would be to network with other regional programmes around the world to share information and identify “best” practices, such as the “Stop Youth Suicide Campaign”(www.stopyouthsuicide.com).


Matthew Herder suggests it may be time to re-examine the purpose of the U.S. Orphan Drug Act. The Orphan Drug Act (ODA) , first ePLOS Medicine, Aaron Kesselheim and colleagues document an embedded trend: within the increasing number of drug approvals targeting rare diseases, there is a substantial minority of biomarker-defined subsets of more common diseases, especially cancers [In a new article published in  cancers . Comment cancers ,6. Due t cancers .Most of the policy and scholarly response to the orphan drug pricing problem to date has been to explore new ways to evaluate orphan drug performance following regulatory approval ,9. HowevBefore the ODA became law, Congress heard diverse views about which R&D “orphans” the legislation should attempt to rescue . Some wiso infrequently in the United States that there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will be recovered from the sales in the United States of such drug” [Even so, the ODA did not originally include a prevalence-based definition of rare disease. Rather, the ODA defined a “rare disease or condition” as one that “occurs ch drug” . Orphan However, just as the Food and Drug Administration (FDA) began making “determinations” about whether a given disease met the ODA’s test of market neglect, the FDA’s task was grossly simplified. In 1984 the ODA was amended, redefining rare diseases as those affecting “less than 200,000 persons in the United States”  or more than 200,000 persons, but for whom “there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will be recovered from the sale in the United States”  .With that change, the FDA went from requiring evidence of the commercial non-viability of orphan drug R&D to assuming commercial non-viability, provided the drug targeted fewer than 200,000 persons. Numerous studies that suggest that orphan drugs are actually more profitable than non-orphan drugs call this underlying assumption into serious question ,13,14. AWhat should be done? One idea is for the FDA to try yet again to cut down on the practice of salami slicing and, in turn, to better discriminate between genuine and artificial rare diseases. In 1992, the FDA first purported to curb salami slicing by requiring that, for subsets of common diseases to be considered rare, they needed to be “medically plausible” , a term Fundamentally, though, the purpose of the ODA merits re-examination. At bottom, the ODA was intended to redistribute resources to medical needs that would otherwise be marginalized by market forces. With the introduction of the prevalence-based definition of rare disease, we began losing sight of the ODA’s core, redistributive function.To restore that function, we need to open up the very concept of an orphan disease or condition under the ODA and resume the scrutiny of claims of market-mediated, unmet medical need instead of policing the ever-shifting boundaries of disease. After all, “the category of orphan diseases bears no essential relationship to their prevalence, morbidity, or mortality” . Markets


A conflict arises when several mutations are required for adaptation, but each mutation is separately deleterious. The process of a population evolving from a genotype encoding for a local fitness maximum to a higher fitness genotype is termed an public goods scenario, wherein each individual contributes resources that are later equally redistributed among all cooperating individuals. We use mathematical modeling and stochastic simulations to study the effect of cooperation on peak shifts in both panmictic and structured populations. Our results show that cooperation can substantially affect the rate of complex adaptation. Furthermore, we show that cooperation increases the population diversity throughout the peak shift process, thus increasing the robustness of the population to sudden environmental changes.Here we suggest cooperative behavior as a factor that can facilitate adaptive peak shifts. We model cooperation in a We provide a new explanation to adaptive valley crossing in natural populations and suggest that the long term evolution of a species depends on its social behavior.The online version of this article (doi:10.1186/s12862-017-0983-2) contains supplementary material, which is available to authorized users. First, In contrast to Wright, some researchers have suggested that adaptive landscapes, which can be extended to various topologies in multidimensional genotype spaces –8, mightShifting Balance Theory, was based on a subdivision of the population into small demes in which mutation and random genetic drift can bring the population to the base of the “peak”. Then, mutation and natural selection allow the deme population to climb the higher “peak”, and migration can allow the new genotype to spread to other demes. While the Shifting Balance Theory has been demonstrated to work in specific cases [Wright himself was the first to offer a theoretical solution to the adaptive peak shift problem . His solic cases –15, the ic cases , 17.Additionally, considerable amounts of research has focused on finding unique conditions which can facilitate adaptive valley crossing: Dividing the population into smaller subpopulations connected by migration was shown to increase the rate of adaptive valley crossing, even without Wright’s assumptions of increase and decrease in deme sizes as a function of the beneficial genotypes inhabiting them ; Furtherstochastic tunneling” [Crossing adaptive valleys can occur through two types of dynamics, driven by either drift (when selection is weak) or selection (when selection is strong enough). In the first case, the single mutants can increase to a relatively high frequency by drift, from which the double mutants can emerge by either mutations or recombination between single mutants, and eventually take over , 24. In nneling” , 28), annneling” . In thisWe consider an additional factor that can affect the process of crossing adaptive valleys: cooperative behavior. We show that for a population subdivided into demes and connected by migration, cooperation between individuals within the same deme can considerably increase the rate of adaptive peak shifts. Note that we assume cooperation has either already evolved and fixated, or will not evolve, in the populations in question. We do not model the evolution and spread of cooperative behavior.public goods form of cooperation [We focus on a peration : all indCooperation has an opposite effect on the fixation of the fittest genotype. Precisely because cooperation smooths the adaptive landscape, it reduces the relative advantage of the fittest genotype, and with it, its fixation probability. Nevertheless, we show that for intermediate levels of cooperation the increase in the rate of appearance of the fittest genotype outweighs the decrease in its fixation probability, and altogether shortens the total adaptation time. Furthermore, we find that smoothing the adaptive landscape serves the cooperative population in another sense: it increases the population diversity. This increase in diversity is beneficial in evolutionary terms, as it can help populations to overcome environmental changes, parasites, etc. .Overall, our results show that cooperation affects adaptive peak shifts substantially and might be an important and overlooked component of complex adaptation.ab is 1; the fitness of the single mutant genotypes, Ab and aB, is 1 − s; and the fitness of the double mutant AB is 1 + sH. s and H are the selection coefficient of the single mutant and the double mutant coefficient, respectively . We assume equal forward and backward mutation rates for both loci (defined in units of mutations per generation per locus), and denote them by μ. Recombination occurs with rate r per generation per loci pair.We model a population of sexually reproducing haploid individuals, containing two bi-allelic loci. Before considering cooperation, the basic fitness of the wild-type n demes connected by migration, each of size k. Thus, the total size of the population is N = n · k. Each generation, individuals of the same deme cooperate. We model cooperation using a public goods scenario [c of its baseline fitness to the deme (0 ≤ c ≤ 1), and this fraction is hereafter referred to as the ‘cooperation level’; the sum of all contributions is multiplied by a constant b (b ≥ 1); finally, this sum is equally redistributed between the deme members. Hence, b determines the fold-increase of contributed resources due to cooperation.We model a population composed of scenario : Each inωi, as the original fitness of individual i, determined by its genotype , and derive the fitness ωi , d of individual i in deme d, after considering cooperation:In our model, the fitness of each individual is determined by its genotype and the effect of cooperation. We denote m and mate. Setting m = 1 − 1 ⁄ n describes a panmictic population, in which offspring are randomly regrouped to new demes every generation and mate. For simplicity, we assume that migration to each deme is equiprobable. The offspring generation replaces the parent generation, so that population size remains constant and generations do not overlap  and they were in close agreement  and a non-cooperative population (τ0) is denoted by We denote the adaptation time in a population with cooperation level We explore the effect of cooperation on the rate of peak shifts, in the presence of strong selection  decreases, more single mutants are found in the population, and the expected waiting time for the appearance of a double mutant decreases. Analogously, as the selective advantage of the double mutant (sH) increases, so does its fixation probability  and the cooperation  at mutation-selection balance (before double mutants first appear or when they are still rare)  decreases both effective selection coefficients.Our analysis also revealed that mentclass2pt{minimHence, cooperation has contrasting effects over the two main stages of the peak shift: First, it reduces the disadvantage of the single mutants, therefore increasing their survival. As a result, the waiting time for the first double mutant shortens in comparison to a non-cooperative population , can be estimated using Eqs. ρ(c = 0.6), derived from our approximation, as a function of the selection coefficient (s), and the double mutant coefficient (H), for two recombination rates and two deme sizes. When selection against the single mutant and the double mutant coefficient are high .Fig. 1Ck) affects the peak shift process by changing the influence of rare individuals on the fitness gain from cooperation. In cooperative populations, increasing deme size reduces both the disadvantage of single mutants and the advantage of double mutants . Differently, varying deme size has no influence on the effective selection coefficients in a non-cooperative population (as can be seen in eq. c = 0).The deme size , larger deme sizes decrease the waiting time for the first appearance of a double mutant significantly, while still retaining sufficient fitness advantage for the double mutant to fixate. Thus we see that under strong selection, increasing the deme size increases ρ(c) . Increased deme size when selection is mild, on the other hand, might decrease the double mutants’ advantage to a point where it is too low to allow a selection-driven peak shift. Thus, even though large demes can hasten the peak shift process of a cooperative population when selection is strong, they can also preclude selection-driven peak shifts when selection is mild .The effect of deme size on s and H where both populations do not reach a peak shift under the process we model, expand with higher recombination  on the adaptation time with and without cooperation. Figure ρ, for populations with low and intermediate migration rates. Similarly to Fig. ρ is a function of the selection coefficient, s, on the horizontal axis, and the double mutant coefficient, H, on the vertical axis. Limited migration retains the properties exemplified for a panmictic population; high recombination values narrow the range of conditions leading to a selection-driven peak shift , cooperation level (c), and cooperation benefit (b) on the peak shift process. In Fig. We further investigated the effects of migration rates  has a similar effect to the one observed for panmictic populations , b doesn’t affect the results. With full cooperation (c = 1), all individuals within a deme have the same fitness regardless of their genotype, thus yielding the same relative fitness for all b values , against varying s and H values. For all examined selection coefficients, s and H, cooperation increases the diversity relative to a non-cooperative population, usually by more than two-fold (DR(0.6) > 1, Fig. We define the relative increase in diversity between cooperative and non-cooperative populations to be During a peak shift, populations reach mutation-selection balance under two selective regimes: First before the successful double mutant appears and second after it fixates. The population diversity in the second mutation-selection balance is lower than in the first, since the selective disadvantage of the single mutant compared to the double mutant is higher than compared to the wild-type. Cooperation reduces the effective disadvantage mentclass2pt{minimWhen selection is strong, cooperators achieve a peak shift faster and spend more time in the second mutation-selection balance, relative to non-cooperators  might be optimal for achieving peak shifts.In this study, we have shown that cooperation can be an important factor in the evolution of complex traits. We have found that in a division-of-labor type of interactions between individuals [Our work belongs to a class of solutions that do not directly alter the genotype-phenotype map, but effectively smooth the adaptive landscape, and are common as means of explaining ostensibly implausible adaptive peak shifts. Some examples for this are changes in environmental conditions causing fluctuations in the adaptive landscape , changesividuals . ImportaWe also examined how cooperation affects genetic diversity. Cooperation “smooths” the adaptive landscape by decreasing selection intensity. Therefore cooperation increases genetic diversity before, during, and after a peak shift Fig. : SI3. Thpublic goods type of cooperation as it is a common form of cooperation in nature [Cooperation is a widespread biological phenomenon, with a vast body of theoretical literature supporting its evolutionary feasibility –44. We cn nature  and therm ≪ 1).The focus of our work is the effect of cooperation on the dynamics of complex adaptation, rather than the conditions leading to the emergence of cooperative behavior. We note that our results hold for populations with low relatedness (in a panmictic population) as well as populations with high relatedness . This assumption can be violated if migration is fitness-associated at the individual level. In this case, less fit individuals may be inclined to migrate more often in order to improve their offspring’s genotypes  and coopRecently, Komarova has shown that peak shifts in asexual populations in a spatially heterogeneous environment can be facilitated by cooperation when genes affecting cooperation also determine the fitness and cooperators directly compete with non-cooperators . Howeverpublic goods [Multicellular, sexually reproducing organisms are an obvious fit to our model assumptions, as long as recombination rates between the relevant loci are low and selection is not too weak. Our model can also be relevant to bacteria which can face a peak shift challenge, for example, when developing antibiotic resistance , 48. Furic goods –54. Our ic goods –59.We suggest a possible interplay between evolutionary forces and social behavior: Cooperative behavior can hasten the appearance of complex traits with increased fitness, which in turn might play a role in maintaining cooperative populations.


Through the use of diagramming and mapping the interconnectedness of relationships across space and place, the therapeutic process is brought to life to encourage practitioners to explore the ‘invisible’ threads that constitute significant meanings to clients.This paper discusses the merits of pluralism in practice. It argues for a wider recognition of creative and integrative approaches, such as those used in the field of children’s geographies (involving places and spaces), as a way of unlocking practitioner potential and innovation. By re-thinking child and human development, viewing it as socially, culturally and philosophically bound, through the proposed concept of  Considerations of attachment theory and Bowlby’s  signific‘vectors of entanglements’; as corporeal, visceral and vitalistic bodies that create relations of production through complex chains of interactions, interconnections and entanglements through webs of relationality:between the lines of writing.…we are all made of lines. We are not referring to lines of writing. Lines of writing conjugate with other lines, life lines, lines of luck or misfortune, lines productive of the variation of the line of writing itself, lines that are , we would observe a continuous flow of interactions among the child-parent/s-environment dynamics  fundamentally becoming attuned together and being affected by one another, creating multiple subjectivities  along creative lines, we can incorporate new, challenging and exciting ideas into our therapeutic engagements. These can take on the shape of rhizomatic maps, movements and diagrams; thus, tracing a journey that travels along a mutual path of discovery. Pure modalities prevail, yet, because evidence informs us that not ‘one size fits all’, a pluralistic and integrative perspective is advocated. We continue along our familiar unitary paths for positive ‘outcomes’ to our peril, burdened by the weight of evidence-based practice demands. What we lose along the way is the creative ‘self’ we possess.The tendency to categorise, hypothesise, label and construct definitive ideas of human behaviour is largely a manifestation of our benevolent quest to heal and help. This type of classification is exposed by both Deleuze and Guattari  and by LThe power of objects and things to convey a force and vitalism has resonated with several other scholars. We only need remind ourselves of how Freud gained tremendous insight from watching his grandson (Ernst) playing with a simple bobbin reel, observing how he would throw the bobbin behind a curtain and say ‘Ooooh’ and then, retrieving it by pulling on the string, he would say ‘Aaaah’. Freud deduced that his grandson was ‘testing out’ what it means to go away and come back – separation and reunion. This symbolic re-enactment of the coming and goings of Ernst’s mother swayed Freud to go ‘beyond the pleasure principle’ (1920) in his realisation that loss and recovery constitute both pain and pleasure Freud . What ErAlong similar lines, Winnicott , in his vectors of entanglements, then we are invited into a world of ‘meshwork’ in which relationships can be woven into rich tapestries of new meaning and relational fabric. The reciprocal ‘flows’ between children and others  takes place through sensory awareness and along lines of connectivity. Indeed, the symbolic image of the child’s teddy bear encapsulates this phenomenon wonderfully in how it comforts and soothes, materialistically and emotionally. The corporeal ‘dance’ of teddy  and child takes place through movement, linear entanglements, without beginning or end, along ‘lines of flight’ that can be considered multiple ‘trails of becoming’.What both Freud and Winnicott’s examples have in common could be revisited through Ingold’s  captivatenhancing it. Patterns of interactions are patterns of lines entwined and woven together. A sensory process emerges in banal encounters, reframing them as meaningful and vital. A new kind of ‘object-relations’ can emerge in counselling practice; one in which there is greater integration and recognition of ecological ontology and human geography. These patterns, tracings and trails can be considered the remnants of ourselves that we infuse and leave behind; our affect and energy poured into spaces and atmospheres . The different individuated relations a child enters can enable greater understanding of how a child ‘becomes’ and grows. These ‘agents’ are not always persons  and they function and serve as a basis of relations – relations of production. Process mapping, tracing or diagramming can serve as a tool for pluralism to emerge in therapeutic encounters. These encounters can be sensory produced and not exist merely in an abstract domain.rhizomatic; that is, truly being and becoming. This can be transferrable to the practice of counselling. Beyond Deluzian metaphor and neologisms, the kinaesthetic and visceral logics of the child’s body has significant meaning. As Freud postulated the fundamental aspects of the human psyche as involving primitive drives and desires, we should awaken new configurations by synthesis across scholarly ideas. By adding Deleuze and Guattari's . These are feelings (entangled) transmitted through the body, as a sensory and visceral force of energy flow, involving invisible threads that connect and bind us Simmel . It invoin places [rather] than travel in them. Rather, knowledge is regional; it is to be cultivated by moving along paths that lead around, towards or away from place, from places elsewhere.Knowing, like the perception of the environment in general, proceeds along paths of observation. One can know Within such entanglements, empathic communication shifts the client into a new and different space as they integrate this meaningful experience. As such, the mapping of process is animated and brought into liveliness through its visual capture. This in itself can be validating and transformative for the client as experience/encounter is both felt and seen. Therefore, mapping and diagramming the therapeutic process provides a powerful tool, a reflexive measure of emplacement (understanding of the relationship between body and the environment) Pink . This fuBy thinking of places being experienced as embodied, as atmospheric, infused with activity of differing intensities (emotions and affects) and presence, place can become an ‘event’ Pink . Such evWhat both Winnicott and Freud’s earlier examples demonstrate are the visceral connections and sensorial nature of being, which are purported to be stronger in childhood Sibley . As CausIt is within the context of therapeutic space that children negotiate the tensions between regulation (of space) and individuality. As James , p. 27 pThe production of lines can depict many diverse feelings and, as both Ingold  and CausLines are everywhere. They are already embedded into everyday practice, depicted in genograms, ethograms, timelines, and ecomaps, to name but a few. Perhaps Deleuze, Guattari, and Ingold have provided a ‘life-line’ to research and practice. It can take many shapes and forms, and it is only the limitations of our imagination that renders them insignificant, intangible and invisible.By reconciling and synthesising a myriad of approaches, new lines of inquiry can emerge. As children direct their attention as individual agents who respond to objects as affordances within their environments (see Gibson Through embracing this diverse, opportune, pluralistic, hybrid and philosophical position, we become open as human beings, to be counsel to all the vicissitudes of our own ‘knowing’ and ‘becoming’. Such lines of flight can be enchanting and liberating to practice. This offers therapeutic approaches a shared, visual landscape; a space and place for new connections and entanglements to emerge and unfold. In doing so, pluralism can find a platform that allows individual growth, self-reflection and self-awareness as a joint parallel process between counsellor and counselled. This reaches beyond current practice restrictions and returns it to being needs-led rather than outcome-led. Pluralism matters.We cannot ‘unknow’ what we already know, or be entirely ‘pure’ in our practice. Can counsellors merely focus just on an individual’s ‘unhelpful cognitions’ without knowing their systemic as well as schematic nature? All theories are inter-linked and entangled, not separate and disparate entities. We must take up the challenge of ‘hybridity’ and pluralism through mingling and merging with all our capacities as ‘psycho-geographers’ Rose , p. 23 t


The aim of this study is to offer appropriate criteria to evaluate effective dashboards for healthcare organizations.In a Delphi study, a team of information technology consultants were asked to determine a set of user interface requirements for evaluating, building or selecting the dashboard. In the first round, a list of main features or criteria to be used was determined based on the panel’s rating,.In this study, it was revealed that a set of key criteria for evaluating the dashboards can be used for all types of dashboards. These criteria were classified into 7 main categories including user customization, knowledge discovery, security, information delivery, alerting, visual design, and integration and system connectivity.Choosing good criteria for selecting effective dashboards for healthcare organizations is very critical because these organizations follow a data-intensive and technology-driven environment. This study revealed the importance of key criteria which can guarantee development of an evaluation checklist. With so many dashboards available, choosing an appropriate one often boils down to the users of dashboard tools .This intellectual and visual tool has been used in healthcare fields, for example, 1) in the operation roomsto allocate resources and cost management,  in radioThe dashboard should have goals set by users and consistently meet their expectations. End user experience is one of the major features of dashboard software . End useIn this regard, it is necessary for the dashboard to communicate information about the pros and cons of decision alternatives quickly, highlight factors that merit consideration, and provide information in a non-linear format to facilitate its incorporation in decision making deliberations .While dashboards constantly evolve, developing evaluation criteria based on clinical relevance, efficiency, and usability is important . The mai2In this Delphi study, a review of literature was firstly performed to gain a good understanding of the criteria that contributed to evaluation of the dashboard tools. Based on the literature review, a number of features and their relevant elements were extracted to assist and inform user interface requirements. These features were known as category and the elements were known as criteria. It was then set which criterion was relevant for each category.Next, a panel of information technology consultants composed of experts in health information management, medical informatics, and software engineering along with radiologists as end users (because a prototype of the dashboard was used in the radiology department.) were asked to confirm and rank these criteria with an open ended question included to seek further potential criteria. In this process, the panel was asked to declare their opinions about whether a criterion is necessary or not. They also were asked to rank every criterion based on its priority and the degree of importance in terms of category. In this regard, an electronic checklist including items such as criteria, yes, no, rank, and your comments were designed. In the first round, a list of the criteria to be used was determined. SPSS (ver. 16) was then employed for descriptive statistical analyses.31-7).Out of the 46 experts, 42 completed their task. A total of 56 criteria statements were confirmed in the first round. Since in the first round no offers were gained, the Delphi study was completed with only one round. 56 important criteria for evaluating or building or selecting an effective dashboard were categorized into 7 groups. These are presented in Tables (The results showed that the first category “user customization” and its four main subgroups were highly rated, except for “discussion forum” which was ranked at the level of 5. The “knowledge discovery” category covered 5 criteria with the same degree of importance. All the criteria ranked as 1. In the category of “security”, 7 criteria were of which only the “version control” criterion gained the lowest rank as 5.There were 8 criteria included in the “information delivery” of which the “Sorting the report” was found at the lowest rank of 6. The “visual design” entailed 10 criteria of which the “single screen with no scrolling” gained the lowest ranking of 6. The “alert” category contained 10 criteria in which the “delivering alert through pager” obtained the lowest priority of 3. The “system connectivity and integration” category consisted 6 criteria of which the “integrating with portal” was considered as the lowest rank of 3.4Based on the results, the dashboard evaluation criteria were grouped into 7 major categories. The first category included “user customization”. This criterion can empower the users to response rapid changes in environment and turn their departments to agile department . In thisThe second category was knowledge discoveryin which all the criteria obtained high priority, because they allow users to conduct root analysis, especially when diving to discover cause of incidents or problems , 12.Among the security criteria, “version control” found the lowest priority. The definition of version control is a “repository of files, often source code files of computer programs, with monitored access. All changes applied on source files are tracked along with who made such changes, why they did it, and references to problems fixed, or enhancements introduced” . TherefoAlthough, dashboard is not a reporting tool, however, its main use is reporting. Therefore, the way of “information delivery” is very important for dashboard design. The dashboard should meet the objectives that are defined and understood by the users on an ongoing basis. And also, the context of the contents being displayed in the dashboard should be in clarity , 14.The options such as sorting, filtering, exporting, inserting, deleting, scheduling, and updating are the user’s interactions with the dashboard. Pleasurable and respectful user interaction can enhance user’s quality of work-life because it enables the users to access to information at the right time with the least amount of effort and also keeps the dashboard stable dynamically -16.The sixth group was “visual design”. The dashboard should be visually appealing and engaging without overwhelming the users but make them feel comfortable and enable them to change the information layout . It is nThe criterion “metadata and help” informs the user about the dashboard and instructions for its use. This information should be visible or easily retrievable whenever appropriate. In this category, visual intelligence means the capability of software to provide better insight through intelligently highlighting relevant areas and values on the dashboard in response to a user's cursor movement. Intelligent presentation improves the user's ability to extract information from data” .“Alerting” was the seventh category. The alerts are a mechanism to turn the focus to the exceptions, outliers and data highlights. Whether embedded in the dashboard or presented separately, alerts can be used as extra layers of abstraction to make a dashboard more useful . The dasAlso, agents can be used in data models for registering and managing alerts if alerts are to be shown in groups or individual . Agent iFinally, the seventh category was “system connectivity and integration”. The dashboard software must be coordinated with the system infrastructure in organization. It must support different versions of all operating systems used within the organization and also must fall into the domain of organization’s application servers. On the other side, the dashboard should be able to capture live data from various data sources, and if data values in the specific data source have changed, those changes should be reflected in the dashboard. It should be able to interact with standard databases such as relational or multidimensional data bases . IntegraSince healthcare is a data-intensive and technology-driven environment, choosing good criteria to select effective dashboards for using in such environment is critical. This study tried to reveale the importance of key criteria which could inform the development of a checklist for evaluating the dashboards. Align with progression in dashboard technology, comparative study and user feedback will lead to further improvement in this field.


The modern evidence-based practice movement owes a lot to librarians; in fact, some would say that it could not have happened without them. Yet the library profession still has not totally embraced the concept of evidence-based practice in its own field, nor fully utilized it as a source for decision making. In this work, Koufogiannakis and Brettle bring together “recent theory, research and case studies from practice environments across the broad field of librarianship to illustrate how librarians can incorporate the principles of evidence-based library and information practice (EBLIP) into their work” (p. 3).While the EBLIP movement was mentioned in 1995 by Haines and Roddham, Bradley, and Marshall, it was Eldredge who in 1997 not only first used the term “evidence-based librarianship,” but also firmly planted and started the movement in earnest. In 2000, the Medical Library Association Research Section created an Evidence-Based Librarianship Implementation Committee to promote EBLIP as both a practice and a part of the professional culture.Evidence-based practice in libraries has evolved over the years and has become known as EBLIP. The model used in this book is based on Koufogiannakis’s doctoral research results. Koufogiannakis and Brettle refer to Eldredge’s original model for EBLIP from 2000, as well as Booth and Brice’s 2004 work. Koufogiannakis’s “revised model for EBLIP” is described as one that takes a “holistic approach,” “incorporating research evidence as well as local evidence and professional knowledge” (p. 13).An essential part of EBP is research that builds a body of knowledge, but “within librarianship…we also need to consider local context and circumstances, because the decision being made is specific to those circumstances. The populations we serve and their needs are not necessarily the same in all instances” (p. 14).This work is divided into two parts. In part 1, the authors devote chapters to each of the five elements of their new model for EBLIP. Table 2.1: “Elements of the EBLIP process” (p. 15) outlines the five elements:Articulate: A clear understanding of the problem or question must be reached. Part of articulating the problem includes working out what is known already and why the information is needed, as well as ensuring that the problem is set in the appropriate context.Assemble: Evidence should be assembled from multiple sources that are the most appropriate to the question or problem at hand and should include research evidence, local evidence, and professional knowledge.Assess: Evidence should be assessed for its quality , determining what the evidence says as a whole.Agree: Determine a course of action and begin implementation of the decision. If working with a group, try to achieve consensus based on the evidence and organizational goals.Adapt: Evaluate the decision and how it has worked in practice. Revisit goals and reflect on the success of implementation.Part 2 of this work, “EBLIP in Action,” offers all-important “real life” examples of EBLIP in all types of libraries. Wilson discusses “Practitioner-Researchers & EBLIP” and describes, among other issues, the challenges, motivation, funding, and ultimate benefits of conducting research as a practicing librarian, and their deep connection to EBLIP as they bridge the gap between research and practice.Somerville and Kloda speak to EBLIP in “Academic Libraries.” They briefly summarize three widely diverse examples of EBLIP in academic libraries from around the world that “support the customization of EBLIP principles and practices to local circumstances.”Eldredge, Marshall, Brettle, Holmes, Haglund, and Wallace devote a chapter to EBLIP in “Health Libraries,” where the movement found its genesis: “The EBLIP movement has helped to move research and its application into the practice realm…Health librarians will, no doubt, continue to pursue EBP in a way that includes the priorities and approaches common to the health settings in which they work” (p. 131). Other chapters speak to EBLIP in public libraries, school libraries, and special libraries. A number of figures and tables effectively amplify the text.Koufogiannakis and Brettle present an excellent overview of the history and evolution of library evidence-based practice along with the current state of EBLIP. The model they have presented is demonstrated to be usable across the library spectrum. This work is highly recommended.