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Objectives: To assess the use of a co-designed patient-reported outcome (PRO) clinical dashboard and estimate its impact on shared decision-making (SDM) and symptomatology in adults with advanced cancer or chronic kidney disease (CKD)., Materials and Methods: We developed a clinical PRO dashboard within the Northwestern Medicine Patient-Reported Outcomes system, enhanced through co-design involving 20 diverse constituents. Using a single-group, pretest-posttest design, we evaluated the dashboard's use among patients with advanced cancer or CKD between June 2020 and January 2022. Eligible patients had a visit with a participating clinician, completed at least two dashboard-eligible visits, and consented to follow-up surveys. PROs were collected 72 h prior to visits, including measures for chronic condition management self-efficacy, health-related quality of life (PROMIS measures), and SDM (collaboRATE). Responses were integrated into the EHR dashboard and accessible to clinicians and patients., Results: We recruited 157 participants: 66 with advanced cancer and 91 with CKD. There were significant improvements in SDM from baseline, as assessed by collaboRATE scores. The proportion of participants reporting the highest level of SDM on every collaboRATE item increased by 15 percentage points from baseline to 3 months, and 17 points between baseline and 6-month follow-up. Additionally, there was a clinically meaningful decrease in anxiety levels over study period (T-score baseline: 53; 3-month: 52; 6-month: 50; P < .001), with a standardized response mean (SRM) of -0.38 at 6 months., Discussion: PRO clinical dashboards, developed and shared with patients, may enhance SDM and reduce anxiety among patients with advanced cancer and CKD., (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Medical Informatics Association.)

Background: Despite progress in developing learning health systems (LHS) and associated metrics of success, a gap remains in identifying measures to guide the implementation and assessment of the impact of an oncology LHS. Our aim was to identify a balanced set of measures to guide a person-centered oncology LHS., Methods: A modified Delphi process and clinical value compass framework were used to prioritize measures for tracking LHS performance. A multidisciplinary group of 77 stakeholders, including people with cancer and family members, participated in 3 rounds of online voting followed by 50-minute discussions. Participants rated metrics on perceived importance to the LHS and discussed priorities., Results: Voting was completed by 94% of participants and prioritized 22 measures within 8 domains. Patient and caregiver factors included clinical health (Eastern Cooperative Oncology Group Performance Status, survival by cancer type and stage), functional health and quality of life (Patient Reported Outcomes Measurement Information System [PROMIS] Global-10, Distress Thermometer, Modified Caregiver Strain Index), experience of care (advance care planning, collaboRATE, PROMIS Self-Efficacy Scale, access to care, experience of care, end-of-life quality measures), and cost and resource use (avoidance and delay in accessing care and medications, financial hardship, total cost of care). Contextual factors included team well-being (Well-being Index; voluntary staff turnover); learning culture (Improvement Readiness, compliance with Commission on Cancer quality of care measures); scholarly engagement and productivity (institutional commitment and support for research, academic productivity index); and diversity, equity, inclusion, and belonging (screening and follow-up for social determinants of health, inclusivity of staff and patients)., Conclusions: The person-centered LHS value compass provides a balanced set of measures that oncology practices can use to monitor and evaluate improvement across multiple domains., (© The Author(s) 2022. Published by Oxford University Press.)

Background: The IBD Qorus Collaborative aims to reduce variation and increase the value of care for the adult inflammatory bowel disease (IBD) community. To evaluate the success of the collaborative, we aimed to develop a balanced set of outcome measures that reflect a multistakeholder view of value in IBD care. To achieve this, we used the Clinical Value Compass framework and engaged a mixed-stakeholder group to conduct a modified Delphi process. The end result was a 10-measure set to assess the value of IBD care., Method: The modified Delphi process included 3 iterative rounds of blinded voting and interactive webinar-style discussion. We recruited 18 participants for the Delphi panel, including clinicians, researchers, patients, Crohn's & Colitis Foundation staff, and payers. Participants first identified constructs to measure, then identified the tools to measure those constructs. A literature review and environmental scan of current measures in 4 domains were performed, and relevant measures were proposed for discussion and voting in each domain. Throughout the process, participants were invited to contribute additional measures., Conclusion: The modified Delphi process led to selection of 10 value measures across 4 domains: (1) patient experience; (2) functional status; (3) clinical status; and (4) health care costs and utilization. We have successfully completed a 3-stage modified Delphi process to develop a balanced set of value measures for adult IBD care. The value measure set expands upon prior efforts that have established quality measures for IBD care by adding cost and experience of care elements. This work positions IBD Qorus to better assess, study, improve, and demonstrate value at individual, system, and population levels and will inform and empower related research, improvement, and implementation efforts., (© 2021 Crohn’s & Colitis Foundation. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Coproduction of healthcare services by patients and professionals is seen as an increasingly important mechanism to support person-centred care delivery. Coproduction invites a deeper understanding of what persons sometimes called 'patients' bring to development of a service. Yet, little is known about tools that may help elicit that information., Objective: Our objective was to explore potential benefits and limitations of an electronic pre-visit survey (PVS) and dashboard by studying uptake and experiences within the inflammatory bowel disease (IBD) community., Methods: We conducted a mixed-method evaluation of patients and clinicians using the IBD Qorus PVS and dashboard at 24 programmes participating in the IBD Qorus learning health system. We analysed (i) descriptive statistics and thematic analyses of 537 patient surveys, (ii) semi-structured interviews with seven patients and six care teams and (iii) usage data collected between 25 March 2019 and 26 April 2020., Results: Nearly two-thirds (64%; n = 38) of clinicians enrolled ≥25 patients into IBD Qorus; 59% (n = 29) of clinicians received ≥25 electronic PVS, with 3834 PVS received during the study period. Post-visit evaluation surveys were completed by patients following 26% (n = 993) of PVS completions. Among patients who reported using the dashboard for 1 or more months (n = 537), two-thirds (65%, n = 344) used the dashboard at a clinic visit and one-third used it outside the clinic (33%, n = 176). Most patients who used the dashboard during a clinic visit said it was helpful in discussions with their clinician (82%), in talking about what matters most (76%) and in making healthcare decisions (71%). Patients using the dashboard during the clinic visit reported higher levels of shared decision-making than those who did not use the dashboard (82% vs. 65%, P < 0.001). This relationship remained significant after controlling for receipt of care at a clinic with the highest levels of patient-reported shared decision-making (odds ratio: 2.1; confidence interval: 1.3-3.3). Patients and clinicians found the greatest value in using the PVS and dashboard to share concerns and symptoms, prepare for a visit and support discussions during the visit. The lack of integration with existing electronic health records (EHRs) limited clinician usage of the PVS and dashboard., Conclusions: The PVS and dashboard created a shared language, which supported coproduction and shared decision-making and facilitated a shared understanding of goals, concerns, symptoms and well-being. To support uptake, future systems should reduce implementation burden for healthcare professionals and integrate seamlessly with existing EHR systems and workflows., (© The Author(s) 2021. Published by Oxford University Press on behalf of International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Introduction: The greatest challenge confronting political, public health, business, education and social welfare leaders in the COVID pandemic era is to restore the economy, businesses and schools without further risking public health. The 'COVID Compass' project aims to provide helpful information to guide local decisions by tracking state and local policies over time and their impact on a balanced set of outcomes-health metrics, economic trends and social hardship indicators., Methods: We selected a parsimonious set of 'local level' health, economic and hardship outcomes and linked them to 'local level' actions aimed to decrease COVID-19 health effects and to mitigate hardship for people, businesses and the economy. Data trends will be released frequently (e.g. weekly and monthly) to show changes in health economic and social hardship 'outcomes' (based on quantitative data), alongside policy, health care, public health and individual/social 'actions' (based on both qualitative and quantitative data)., Results: Work on initial analytic and visualization prototypes of the COVID Compass is currently in progress at national, state and local levels., Conclusion: Building a national, regional and local integrated database platform that captures upstream policies, actions and behaviors and links them to downstream health, economic and social hardship outcomes will offer a more comprehensive view of the data necessary for decision-makers and citizens to more effectively and intelligently monitor and mitigate harms caused by the pandemic., (© The Author(s) 2021. Published by Oxford University Press on behalf of International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: COVID-19, a respiratory disease caused by the SARS-CoV-2 virus, emerged in 2019 and led to a worldwide pandemic in 2020. The COVID-19 pandemic has been a massive natural experiment in the formation of mitigation strategies to prevent cases and to provide effective healthcare for those afflicted. Regional differences in the impact of the pandemic on morbidity and mortality have been driven by political and regional differences in the coproduction of public health and social policy. We explored the United States (US) experience of COVID-19 for trends and correlations with other nations and also at the national, regional, state and local levels., Objective: To identify geographic and temporal trends in the spread of COVID-19 in the United States., Methods: Population data on COVID-19 cases and mortality were acquired on a daily basis from multiple publicly available databases, including the New York Times and Johns Hopkins University. At each geographic level (national, state and county), geographic entities' reported cases were evaluated for correlations using linear least-squares methods to identify patterns of correlation in the cases independent of scale. We evaluated for two specific characteristics: (i) the nature of the curvature of the line linking across percentile scores, ranging from concave to convex and (ii) the area under this curve, indicating how effectively a selected region (nation, state and county) is linked to its entire containing unit (world, country and state). We used this approach to identify three distinct COVID behavior phenotypes, each of which consisted of a number of states in the USA., Results: We found that COVID activity in the USA follows a unique trend compared to other countries and that within the USA during the first year of the pandemic, three initial COVID phenotypes emerged: (i) the metropolitan outbreak (early outbreak phenotype); (ii) the regional outbreak (summer peak phenotype) and (iii) trans-regional outbreak (fall/winter peak phenotype), which, taken in sum, represent the overall USA national trend. Each phenotype has specific behavioral characteristics and is composed of a cluster of different states experiencing different conditions., Conclusion: Our findings suggest a new opportunity for public health strategy in the pandemic, namely to apply targeted public health approaches to address the specific needs of each phenotype. In the future, we should create databases that capture key health and hardship data elements at the smallest geographic level possible and use these to track trends, predict the future and apply targeted coproduction approaches to more effectively and efficiently safeguard population health, economic vitality and social well-being., (© The Author(s) 2021. Published by Oxford University Press on behalf of International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: COVID-19, a respiratory disease caused by the SARS-CoV-2 virus, emerged in 2019 and led to a worldwide pandemic in 2020. The COVID-19 pandemic has been a massive natural experiment in the formation of mitigation strategies to prevent cases and to provide effective healthcare for those afflicted. Regional differences in the impact of the pandemic on morbidity and mortality have been driven by political and regional differences in the coproduction of public health and social policy. We explored the United States (US) experience of COVID-19 for trends and correlations with other nations and also at the national, regional, state and local levels., Objective: To identify geographic and temporal trends in the spread of COVID-19 in the United States., Methods: Population data on COVID-19 cases and mortality were acquired on a daily basis from multiple publicly available databases, including the New York Times and Johns Hopkins University. At each geographic level (national, state and county), geographic entities' reported cases were evaluated for correlations using linear least-squares methods to identify patterns of correlation in the cases independent of scale. We evaluated for two specific characteristics: (i) the nature of the curvature of the line linking across percentile scores, ranging from concave to convex and (ii) the area under this curve, indicating how effectively a selected region (nation, state and county) is linked to its entire containing unit (world, country and state). We used this approach to identify three distinct COVID behavior phenotypes, each of which consisted of a number of states in the USA., Results: We found that COVID activity in the USA follows a unique trend compared to other countries and that within the USA during the first year of the pandemic, three initial COVID phenotypes emerged: (i) the metropolitan outbreak (early outbreak phenotype); (ii) the regional outbreak (summer peak phenotype) and (iii) trans-regional outbreak (fall/winter peak phenotype), which, taken in sum, represent the overall USA national trend. Each phenotype has specific behavioral characteristics and is composed of a cluster of different states experiencing different conditions., Conclusion: Our findings suggest a new opportunity for public health strategy in the pandemic, namely to apply targeted public health approaches to address the specific needs of each phenotype. In the future, we should create databases that capture key health and hardship data elements at the smallest geographic level possible and use these to track trends, predict the future and apply targeted coproduction approaches to more effectively and efficiently safeguard population health, economic vitality and social well-being., (© The Author(s) 2021. Published by Oxford University Press on behalf of International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Patients at the center of care is often the stated focus of clinicians and healthcare services. The quality and safety movement has shown that effective organization of care is needed, in addition to professional skills. This movement has provided professionals and others with methods to improve both organization and practice for patients. These methods include measurement to give those carrying out improvement feedback about the effects of their changes. New types of measures that enable patients to report treatment outcomes can now be use in quality improvement and quality reporting to bring a renewed focus on making care more patient-centered. Although used for some time in research, these measures are relatively new tools for quality improvement and not all research measures are suitable for everyday feedback or improvement projects. The purpose of the paper is to provide an introduction to the use and value of patient-reported outcome measures in quality improvement and to give practical guidance and resources for using PROMs for quality improvement. It draws on the authors' experiences using patient reported outcomes measures for quality research and improvement and their workshop at the 2016 Tokyo ISQUA conference, as well as on reviews and guidance documents about the use of PROMs. It does not provide a comprehensive and systematic review of research, but an overview and introduction to PROMs for quality improvement., (© The Author 2017. Published by Oxford University Press in association with the International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)