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Purpose Patients with inflammatory bowel diseases (IBD) experience a variety of symptoms and limitations due to their condition. While many outcome measures are available to assess IBD symptom level and disease activity, individual patients’ preferences are usually not accounted for. Individualized outcome measures allow individual patients to select and weigh outcomes based on their relative importance, and have been developed in other medical disciplines. In this study, we explored IBD patients’ perspectives on different strategies to prioritize IBD-specific health outcomes. Methods Existing individualized measures were modified for relevance to IBD patients. We performed six focus groups, in which patients were asked to rate and weigh these measures in a series of exercises and to discuss the pros and cons of five different prioritization methods (Likert scale, ranking, selecting outcomes, distribute points, and using a rotating disk) using a semi-structured approach. A thematic analysis revealed key themes in the data. Results Patients’ thoughts could be grouped into four key themes with 2–4 subthemes each: (1) prioritizing outcomes; (2) differences between methods; (3) outcomes to include; and (4) practical use. Overall, it was challenging for many patients to prioritize outcomes. Among the different prioritization methods, the rotating disk was perceived as the most intuitive. Patients anticipated that this visualization would also help them communicate with their physician. Conclusion In a series of focus groups, a visual rotating disk was found to be an intuitive and holistic way to elicit the relative importance of different outcomes for individual IBD patients.

Inflammatory bowel disease (IBD) care is beset with substantial practice variation. Learning health systems (LHSs) aim to learn from this variation and improve quality of care by sharing feedback and improvement strategies within the LHS. Obtaining accurate information on outcomes and quality of care is a priority for LHS, which often includes patients' self-reported data. While prior work has shown that patients can accurately report their diagnosis and surgical history, little is known about their ability to self-report recent healthcare utilization, medication use, and vaccination status. We compared patient self-reported data within the IBD Qorus LHS regarding recent IBD-related emergency department (ED) visits, hospitalizations, computerized tomography (CT) scans, corticosteroid use, opioid use, influenza vaccinations, and pneumococcal vaccinations with electronic health record (EHR) data. We compared 328 patient self-reports to data extracted from the EHR. Sensitivity was moderate-to-high for ED visits, hospitalizations, and CT scans (76%, 87%, and 87%, respectively), sensitivity was lower for medication use with 71% sensitivity for corticosteroid use and only 50% sensitivity for self-reported use of opioids. Vaccinations were reported with high sensitivity, but overall agreement was low as many patients reported vaccinations that were not registered in the EHR. Self-reported IBD-related ED visits, hospitalizations, and CT scans are reported with high sensitivity and accuracy. Medication use, and in particular opioid use, is less reliably reported. Vaccination self-report is likely more accurate than EHR data as many vaccinations are not accurately registered.

Abstract Background A variety of scoring mechanisms exist to quantify IBD patients’ symptoms and quality of life. However, patients’ symptom experiences are highly variable; different patients experience different symptoms, and the same symptoms result in different levels of disability in different patients. To address these differences, the use of individualized outcome measures has been advocated. In individual outcome measures, patients specifically select outcomes that are relevant to them and then rate their relative importance. Here, we aim to assess the feasibility of four different preference elicitation methods derived from the literature to generate individualized outcomes. Methods We are performing a total of 8 focus groups with IBD patients from four different clinics. Participants with varying age ranges, genders, and IBD diagnoses (CD/UC) are included. During the focus groups, participants perform a series of exercises in which their preferences for different outcomes are elicited: (1) participants select the 5 most important outcomes from a pre-defined list of 10 outcomes (Melmed et al, 2013); (2) participants rate each of the 10 outcomes on a scale from 0 (not important at all) to 3 (very important); (3) participants distribute 50 points to their top-5 outcomes based on their relative importance; and (4) participants use a rotating disk (Figure 1) to visualize the relative importance of their top-5 outcomes. After each step, participants discuss how difficult the exercise was and why they found it difficult or not. Results Here, we present the results of the first two focus groups performed in one community clinic. In total 6 IBD patients were included (66% female; median age 49; 83% CD, 17% UC; median disease duration 24 years). Participants expressed it was challenging to select the 5 most important symptoms; some expressed they wanted to select more outcomes, others less. Participants wanted to add their own outcome to the list, as the list was not perceived to be comprehensive. The exercise in which all outcomes were rated on a scale from ‘not important at all’ to ‘very important’ was perceived as easy, though not all outcomes applied to everyone which led to ambiguity in answer selections. Participants found it hard to distribute 50 points over their top-5 outcomes. The rotating disk (Figure 1) was unanimously considered the easiest method to elicit preferences. Discussion We tested a variety of strategies to elicit patient preferences for different outcomes of care. Based on the results of initial focus groups, a rotating disk is the easiest way for patients to share and display their preferences. Additional focus groups will be performed to assess the use of these methodologies in different settings. These methodologies can be used to understand what outcomes of care really matter for patients and to personalize patients’ care.

Abstract Background The IBD Qorus initiative is a learning health system built on a collaboration between patients and providers that aims to improve the healthcare value for IBD patients. A key feature of learning health systems is the use of data within a collaborative network of patients and providers to learn and disseminate high value practices. IBD Qorus relies for a large extent on patients to self-report their utilization and quality indicator data for this purpose. Therefore, the reliability of these self-reported data elements is of key-importance. The aim of this study is to validate self-reported utilization and quality measures within Qorus. Methods Self-reported utilization and quality indicator data in Qorus was compared to data in the EMR for validation purposes. Chart reviews were performed to extract the number of ED visits, hospitalizations, and CT scans, as well as medication use and vaccination records. The percentage agreement, sensitivity and specificity were calculated. Results In total 168 self-reported records of 101 IBD patients have been reviewed at one participating academic clinic and one community clinic. Self-reported IBD-related ED visits had an 80% sensitivity and 93% specificity; IBD related hospitalizations a 95% sensitivity and 96% specificity; and IBD-related CT scans a 100% sensitivity and 86% specificity. A small number of self-reported ED visits, hospitalizations, and CT scans were not recorded in the medical record (5%, 1%, and 11% of the records, respectively). Self-reported medication use was reported with a sensitivity of 70% for both steroids and narcotics, and a specificity of 98% and 96%, respectively. Only 49% of influenza vaccinations and 60% of pneumococcal vaccinations reported by patients were recorded in the EMR. Discussion Over 80% of patients with a known ED visit, hospitalization, or CT scan reported these events accurately. However, self-report of medication use might be less reliable as only 70% of patients who used steroids or narcotics reported this. Patients’ self-reported utilization might also help identify a small number of ED visits, hospitalizations and CT scans that providers might have been unaware of otherwise. The collection of self-reported vaccination status might augment the data in the EMR, as less than 60% of the vaccinations were recorded in the EMR, indicating that the EMR is an unreliable data source for this purpose.

Human and non-human primate data clearly implicate the dorsolateral prefrontal cortex (dlPFC) as critical for advanced cognitive functions . It is thought that intracortical synaptic architectures within dlPFC are the integral neurobiological substrate that gives rise to these processes, including working memory, inferential reasoning, and decision-making . In the prevailing model, each cortical column makes up one fundamental processing unit composed of dense intrinsic connectivity, conceptualized as the 'canonical' cortical microcircuit . Each cortical microcircuit receives sensory and cognitive information from a variety of sources which are represented by sustained activity within the microcircuit, referred to as persistent or recurrent activity . Via recurrent connections within the microcircuit, activity can propagate for a variable length of time, thereby allowing temporary storage and computations to occur locally before ultimately passing a transformed representation to a downstream output . Competing theories regarding how microcircuit activity is coordinated have proven difficult to reconcile where intercortical and intracortical computations cannot be fully dissociated . Here, we interrogated the intrinsic features of isolated microcircuit networks using high-density calcium imaging of macaque dlPFC . We found that spontaneous activity is intrinsically maintained by microcircuit architecture, persisting at a high rate in the absence of extrinsic connections. Further, using perisulcal stimulation to evoke persistent activity in deep layers, we found that activity propagates through stochastically assembled intracortical networks, creating predictable population-level events from largely non-overlapping ensembles. Microcircuit excitability covaried with individual cognitive performance, thus anchoring heuristic models of abstract cortical functions within quantifiable constraints imposed by the underlying synaptic architecture.

T cells are important in mounting immune responses to a host of pathogens, and they have also been implicated in autoimmune disease. By examining the variability in gene expression in stimulated T cells over time from a multi-ethnic cohort of healthy humans, Ye et al. identified specific genetic polymorphisms that explain differences among individuals in response to pathogens. Furthermore, a candidate gene approach led to the identification of a single-nucleotide polymorphism that controls the response of the autoimmune-associated IL2RA gene. This study helps us understand the degree to which immune responses are driven by the environment or by an individual's physiological or genetic factors. Science , this issue 10.1126/science.1254665 Profiles of T cell responses display genetically influenced interindividual variation. T lymphocyte activation by antigen conditions adaptive immune responses and immunopathologies, but we know little about its variation in humans and its genetic or environmental roots. We analyzed gene expression in CD4 + T cells during unbiased activation or in T helper 17 (T H 17) conditions from 348 healthy participants representing European, Asian, and African ancestries. We observed interindividual variability, most marked for cytokine transcripts, with clear biases on the basis of ancestry, and following patterns more complex than simple T H 1/2/17 partitions. We identified 39 genetic loci specifically associated in cis with activated gene expression. We further fine-mapped and validated a single-base variant that modulates YY1 binding and the activity of an enhancer element controlling the autoimmune-associated IL2RA gene, affecting its activity in activated but not regulatory T cells. Thus, interindividual variability affects the fundamental immunologic process of T helper activation, with important connections to autoimmune disease.