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There is increasing interest in asking patients questions before their visits to elicit goals and concerns, which is part of the move to support the concept of coproducing care. The phrasing and delivery of such questions differs across settings and is likely to influence responses. This report describes a study that (i) used a three-level model to categorize the goals and concerns elicited by two different pre-visit questions, and (ii) describes associations between responses elicited and the phrasing and delivery of the two questions. The questions were administered to patients with rheumatic disease, and patients with inflammatory bowel disease (IBD). Paper-based responses from 150 patients with rheumatic disease and 338 patients with IBD were analyzed (163 paper, 175 electronic). The goals and concerns elicited were primarily disease or symptom-specific. The specific goal and concern examples featured in one pre-visit question were more commonly reported in responses to that question, compared to the question without examples. Questions completed electronically before the visit were associated with longer responses than those completed on paper in the waiting room. In conclusion, how and when patients’ goals and concerns are elicited appears to have an impact on responses and warrants further investigation.

INTRODUCTION: There is significant variation in processes and outcomes of care for patients with inflammatory bowel disease (IBD), suggesting opportunities to improve quality of care. We aimed to determine whether a structured quality of care program can improve IBD outcomes, including the need for unplanned health care utilization. METHODS: We used a structured approach to improve adult IBD care in 27 community-based gastroenterology practices and academic medical centers. Patient-reported outcomes (PRO) and health care utilization were collected at clinical visits. Outcomes were monitored monthly using statistical process control charts; improvement was defined by special cause (nonrandom) variation over time. Multivariable logistic regression was applied to patient-level data. Nineteen process changes were offered to improve unplanned health care utilization. Ten outcomes were assessed, including disease activity, remission status, urgent care need, recent emergency department use, hospitalizations, computed tomography scans, health confidence, corticosteroid or opioid use, and clinic phone calls. RESULTS: We collected data prospectively from 20,382 discrete IBD visits. During the 15-month project period, improvement was noted across multiple measures, including need for urgent care, hospitalization, steroid use, and opioid utilization. Adjusted multivariable modeling showed significant improvements over time across multiple outcomes including urgent care need, health confidence, emergency department utilization, hospitalization, corticosteroid use, and opioid use. Attendance at monthly coached webinars was associated with improvement. DISCUSSION: Outcomes of IBD care were improved using a structured quality improvement program that facilitates small process changes, sharing of best practices, and ongoing feedback. Spread of these interventions may facilitate broad improvement in IBD care when applied to a large population.

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.

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.

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.

Introduction Patients with Parkinson's disease (PD) are at increased risk for hospitalization and often experience worsening of PD when hospitalized. It is therefore important to identify strategies to prevent hospitalization. Methods Hospital encounter rates in different Parkinson's Foundation Centers of Excellence in United States, Canada, Israel and the Netherlands were analyzed as part of the Parkinson Foundation Parkinson's Outcomes Project (PF-POP). Multivariate logistic regression was used to estimate the odds ratio for hospitalization, adjusted for risk factors. Results Baseline age, disease duration, other relative than spouse/partner as care giver, cancer, arthritis, other comorbidities, falls, use of levodopa, use of dopamine agonist, use of COMT inhibitor, occupational therapy before the baseline visit, PDQ-39, MSCI total score and time between visits were significantly associated with the risk of hospital encounters. After adjustment for these factors, two centers had significantly lower odds for hospitalization admission and ER visit (minimum OR 0.3) and four centers had significantly higher odds (maximum OR 1.5) than the average center. Four centers had significantly lower hazard ratios for time to re-hospitalization compared to the average center. Reducing hospital admission rates in those centers with higher than average rates would reduce overall hospitalizations by 11%. Applied to PD patients over 65 nationwide this represents a potential for cost savings of greater than $1 billion over 48 months. Conclusion Encounter rates vary even across expert centers and suggest that practices carried out in some centers may reduce the risk of hospitalization. Further research will be necessary to identify these practices and implement them more widely to improve care for people with PD.

Background New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). Methods We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. Results The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. Conclusions The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of “big data” registries, including patient-reported data, for care, research, and quality improvement.

Background Patient-reported outcomes—symptoms, treatment side effects, and health-related quality of life—are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients’ symptom monitoring, shared decision-making, and effective use of the health care system. Objective The objectives of this study are to co-design a dashboard that displays patient-reported outcomes along with other clinical data (eg, laboratory tests, medications, and appointments) within an electronic health record and conduct a longitudinal demonstration trial to evaluate whether the dashboard is associated with improved shared decision-making and disease management outcomes. Methods Co-design teams comprising study investigators, patients with advanced cancer or chronic kidney disease, their care partners, and their clinicians will collaborate to develop the dashboard. Investigators will work with clinic staff to implement the co-designed dashboard for clinical testing during a demonstration trial. The primary outcome of the demonstration trial is whether the quality of shared decision-making increases from baseline to the 3-month follow-up. Secondary outcomes include longitudinal changes in satisfaction with care, self-efficacy in managing treatments and symptoms, health-related quality of life, and use of costly and potentially avoidable health care services. Implementation outcomes (ie, fidelity, appropriateness, acceptability, feasibility, reach, adoption, and sustainability) during the co-design process and demonstration trial will also be collected and summarized. Results The dashboard co-design process was completed in May 2020, and data collection for the demonstration trial is anticipated to be completed by the end of July 2022. The results will be disseminated in at least one manuscript per study objective. Conclusions This protocol combines stakeholder engagement, health care coproduction frameworks, and health IT to develop a clinically feasible model of person-centered care delivery. The results will inform our current understanding of how best to integrate patient-reported outcome measures into clinical workflows to improve outcomes and reduce the burden of chronic disease on patients and health care systems. International Registered Report Identifier (IRRID) DERR1-10.2196/38461

If the core aim of a healthcare system is to minimise both illness and treatment burden while reducing the costs of care delivery, then we must accept, however reluctantly, that our efforts are largely failing. Life expectancy in highly developed countries is declining for the first time in decades. Long-term conditions and obesity are replacing infectious diseases as the most prominent health problems in developing nations. Meanwhile, average per capita healthcare expenditures are increasing despite efforts to restrain them. For example, in the USA, the average per capita healthcare expenditures are approaching $10 000 a year and consuming over 18% of its gross domestic product. Innovations in biomedicine, information technology and healthcare delivery systems may help address some of the challenges, but instead of containing costs these innovations tend to expand services. There are indications that interest in a concept called coproduction in healthcare is increasing. The core thesis is that by leveraging professional and end user collaboration, patients can be supported to contribute more to the management of their own conditions. This is especially true when dealing with long-term conditions, where supporting the person to learn how best to reduce the burden of both illness and treatment is an undisputed good. The goal is to cocreate value. Ostrom,1 based on her seminal work as an economist, called this coproduction . The cocreation of value already lies at the heart of most service sectors. Shopping, banking and travel all enlist the end user to coproduce value in the delivery of services. Coproduction can be even more powerful where people form alliances to share resources and generate solutions, by using what Christensen et al 2 refer to as ‘facilitated networks’. Facilitated networks offer a powerful strategy that has been adopted by many organisations to increase access, and to improve quality while …

Health systems worldwide are experiencing increasing cost-cutting pressures with more intense competition and rising customer requirements. We aimed to find out and compare the characteristics and successes of two different sustainable business cases in healthcare delivery from an innovation-driven, organizational perspective. The data for the two cases were collected through structured literature research as well as personal interviews with the founders of the two healthcare business models. Data were analyzed using the business model canvas as a structured framework, as well as by cross-case analysis. The two business models operate successfully, but pursue different approaches to healthcare innovation. We were able to show that one model pursues a very complex, network-based approach that is focused on one specific rural region, while the structure of the other is characterized by a scalable concept. In addition, we observed that the founders had a decisive influence on the development and success of the healthcare business models. Our study highlights the multitude of complex relationships required to build and establish innovative and successful business models for providing high-quality and cost-effective services in two of the world’s largest healthcare systems. Moreover, it could be shown that the business model canvas offers a suitable methodological framework to compare and analyze in a structured manner the extent to which innovative care approaches also require an economically successful and sustainable business model. Results give a holistic, structured description of specific organizational features and environments, whch can then serve decision-makers in health and health economics as lessons learned and aid them in decision-making.

Cystic fibrosis (CF) is a genetic disease in which dysfunction of a single protein channel leads to organ damage, resulting in chronic health problems and premature death. In the United States, medical care of individuals living with CF is delivered by care centers accredited and subsidized by the CF Foundation. CF outcomes have improved significantly through the use of collaborative networks, registry data, and research. CF clinicians are perpetually challenged to assimilate and act upon large quantities of data generated by the care of these individuals. CF Foundation accreditation also requires care centers to enter patient-level data from clinical encounters into the CF Foundation Patient Registry (CFFPR). Commercially available electronic health record systems often lack tools with sufficient context specificity and ease of use to facilitate productive interactions between clinicians and patients. We describe a CF-specific NoteWriter template built and implemented in Epic, which captures discrete data and simultaneously generates clinical documentation during ambulatory encounters. Unlike other examples of note templates in CF, this project involves SmartData Elements (SDEs) using the NoteWriter tool in Epic, which enables data to be entered in the exact way in which the CFFPR captures data. By conducting a pre-/poststudy of its use in our health system, we found that the template can expedite note completion when clinicians have adequate time to become familiar with the tool. We anticipate that the NoteWriter template will become a vehicle for delivering standardized, structured patient data to the CFFPR.

The findings of this body of work are presented in the eight articles included in this supplement. The impact and perspectives of adult and pediatric care teams and patient/families are covered with special attention to mental health care, the financial and personnel impacts within care programs, the experiences of vulnerable and underrepresented patient populations, and implementation of remoting monitoring. Commentaries from colleagues provide a broader perspective, offering reflections on the findings and their implications regarding the future CF care model.

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 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.

IntroductionCoproduction introduces a fundamental shift in how healthcare service is conceptualised. The mechanistic idea of healthcare being a ‘product’ generated by the healthcare system and delivered to patients is replaced by that of a service co-created by the healthcare system and the users of healthcare services. Fjeldstad et al offer an approach for conceptualising value creation in complex service contexts that we believe is applicable to coproduction of healthcare service. We have adapted Fjeldstad’s value creation model based on a detailed case study of a renal haemodialysis service in Jonkoping, Sweden, which demonstrates coproduction characteristics and key elements of Fjeldstad’s model.Methods and analysisWe propose a five-part coproduction value creation model for healthcare service: (1) value chain, characterised by a standardised set of processes that serve a commonly occurring need; (2) value shop, which offers a customised response for unique cases; (3) a facilitated value network, which involves groups of individuals struggling with similar challenges; (4) interconnection between shop, chain and network elements and (5) leadership. We will seek to articulate and assess the value creation model through the work of a community of practice comprised of a diverse international workgroup with representation from executive, financial and clinical leaders as well as other key stakeholders from multiple health systems. We then will conduct pilot studies of a qualitative self-assessment process in participating health systems, and ultimately develop and test quantitative measures for assessing coproduction value creation.Ethics and disseminationThis study has been approved by the Dartmouth-Hitchcock Health Institutional Review Board (D-HH IRB) as a minimal risk research study. Findings and scholarship will be disseminated broadly through continuous engagement with health system stakeholders, national and international academic presentations and publications and an internet-based electronic platform for publicly accessible study information.

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.

Introduction On 22 July 2011, Norway suffered a devastating terrorist attack targeting a political youth camp on a remote island. Within a few hours, 35 injured terrorist victims were admitted to the local Ringerike community hospital. All victims survived. The local emergency medical service (EMS), despite limited resources, was evaluated by three external bodies as successful in handling this crisis. This study investigates the determinants for the success of that EMS as a model for quality improvement in healthcare. Methods We performed focus group interviews using the critical incident technique with 30 healthcare professionals involved in the care of the attack victims to establish determinants of the EMS’ success. Two independent teams of professional experts classified and validated the identified determinants. Results Our findings suggest a combination of four elements essential for the success of the EMS: (1) major emergency preparedness and competence based on continuous planning, training and learning; (2) crisis management based on knowledge, trust and data collection; (3) empowerment through multiprofessional networks; and (4) the ability to improvise based on acquired structure and competence. The informants reported the successful response was specifically based on multiprofessional trauma education, team training, and prehospital and in-hospital networking including mental healthcare. The powerful combination of preparedness, competence and crisis management built on empowerment enabled the healthcare workers to trust themselves and each other to make professional decisions and creative improvisations in an unpredictable situation. Conclusion The determinants for success derived from this qualitative study (preparedness, management, networking, ability to improvise) may be universally applicable to understanding the conditions for resilient and safe healthcare services, and of general interest for quality improvement in healthcare.

Background Healthcare coproduction engages patients and clinicians to design and execute services, yet little is known about tools that facilitate coproduction. Our objective was to understand uptake, experiences, benefits, and limitations of a dashboard to support patient-clinician partnerships within the cystic fibrosis (CF) community. Methods People living with CF (PwCF) and clinicians co-designed a dashboard that displayed patient-reported and clinical data. Eight CF programmes, including 21 clinicians, and 131 PwCF participated in a pilot study of the dashboard. We conducted descriptive statistics and thematic analyses of surveys (82 PwCF; 21 clinicians); semi-structured interviews (13 PwCF; 8 care teams); and passively-collected usage data. Results Two-thirds of the 82 PwCF used the dashboard during a visit, and 59% used it outside a visit. Among 48 PwCF using the dashboard outside the clinic, 92% viewed their health information and 46% documented concerns or requests. Most of the 21 clinicians used the dashboard to support visit planning (76%); fewer used it during a visit (48%). The dashboard supported discussions of what matters most (69% PwCF; 68% clinicians). Several themes emerged: access to patient outcomes data allows users to learn more deeply; participation in pre-visit planning matters; coproduction is made possible by inviting new ways to partner; and lack of integration with existing information technology (IT) systems is limiting. Conclusions A dashboard was feasible to implement and use. Future iterations should provide patients access to their data, be simple to use, and integrate with IT systems in use by clinicians and PwCF.

Introduction The collection of patient-reported outcomes (PROs) in routine clinical practice provides opportunities to "feed-forward" the patient's perspective to his/her clinical team to inform planning and management. This data can also be aggregated to "feedback" population-level analytics that can inform treatment decision-making, predictive modeling, population-based care, and system-level quality improvement efforts. Methods aiding interpretation and acting on results Three case studies demonstrate a number of system-level features which aid effective PRO interpretation: (1) feed-forward and feedback information flows; (2) score interpretation aids; (3) cascading measurement; (4) registry-enabled learning health care systems; and (5) the maturational development of information systems. Discussion The case studies describe the developmental span of feed-forward PRO programs-from simple to mature applications. The Concord Hospital (CH) Multiple Sclerosis Neurobehavioral Clinic exemplifies a simple application in which PRO data are used before and during clinic visits by patients and clinicians to inform care. The Dartmouth-Hitchcock (D-H) Spine Center exemplifies a mature program which utilizes population-level analytics to provide decision support by predicting outcomes for different treatment options. The Swedish Rheumatology Quality (SRQ) Registry epitomizes an exceptional application which has spread to multiple systems across an entire country. Key points Feed-forward and feedback PRO information systems can better inform, involve, and support clinicians, patients and families, and allow health systems to monitor and improve system performance and population health outcomes. Ideal systems have the capability for multilevel analyses at patient, system, and population levels, and an information technology infrastructure that is linked to associated workflows and a supportive practice culture. As systems mature, they progress beyond the ability to describe and inform towards higher level capabilities including prediction and decision support. Finally, there is additional promise for the integration of patient-reported information that is adjusted (or weighted) by preferences and values to guide shared decision-making and inform individualized precision health care in the future.

Context No brief patient-reported experience measure focuses on the most significant concerns of seriously ill individuals. Objectives The objective of the study was to develop the consideRATE questions. Methods This user-centered design study had three phases. We reviewed the literature and consulted stakeholders, including caregivers, clinicians, and researchers, to identify the elements of care most important to patients (Phase 1). We refined items based on cognitive interviews with patients, families, and clinicians (Phase 2). We piloted the measure with patients and families (Phase 3). Results Phase 1 resulted in seven questions addressing the following elements: 1) care team attention to patients' physical symptoms, 2) emotional symptoms, 3) environment of care, 4) respect for patients' priorities, 5) communication about future plans, 6) communication about financial and similar affairs, and 7) communication about illness trajectory. Phase 2 participants included eight patients, eight family members, and seven clinicians. We added an open-text comment option. We did not identify any other issues that were important enough to participants to include. Response choices ranged from one (very bad) to four (very good), with a not applicable option (does not apply). Phase 3 involved 15 patients and 16 family members and demonstrated the acceptability of the consideRATE questions. Most reported that the questions were not distressing, disruptive, or confusing. Completion time averaged 2.4 minutes (range 1–5). Conclusion Our brief patient-reported serious illness experience measure is based on what matters most to patients, families, and clinicians. It was acceptable to patients and families in a regional sample. It has promise for use in clinical settings.

Purpose The purpose of this paper is to describe how clinical registers were designed and used to serve multiple purposes in three health systems, in order to contribute practical experience for building learning healthcare systems. Design/methodology/approach Case description and comparison of the development and use of clinical registries, drawing on participants’ experience and published and unpublished research. Findings Clinical registers and new software systems enable fact-based decisions by patients, clinicians, and managers about better care, as well as new and more economical research. Designing systems to present the data for users’ daily work appears to be the key to effective use of the potential afforded by digital data. Research limitations/implications The case descriptions draw on the experience of the authors who were involved in the development of the registers, as well as on published and unpublished research. There is limited data about outcomes for patients or cost-effectiveness. Practical implications The cases show the significant investments which are needed to make effective use of clinical register data. There are limited skills to design and apply the digital systems to make the best use of the systems and to reduce their disadvantages. More use can be made of digital data for quality improvement, patient empowerment and support, and for research. Social implications Patients can use their data combined with other data to self-manage their chronic conditions. There are challenges in designing and using systems so that those with lower health and computer literacy and incomes also benefit from these systems, otherwise the digital revolution may increase health inequalities. Originality/value The paper shows three real examples of clinical registers which have been developed as part of their host health systems’ strategies to develop learning healthcare systems. The paper gives a simple non-technical introduction and overview for clinicians, managers, policy-advisors and improvers of what is possible and the challenges, and highlights the need to shape the design and implementation of digital infrastructures in healthcare services to serve users.

Background: Little is known about the organization of clinical services for Huntington’s disease (HD). Objective: To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study. Methods: In 2014, a 69-item survey was administered to sites taking part in or eligible for the Enroll-HD study. Results: Of 231 sites surveyed, 121 (52.2%) sites in Europe, North America, Latin America, and Oceania responded. Most sites in the sample serve large populations, with 61.1% serving more than 1.5 million people, and a further 33% serving >500,000. Almost all (86.0%) centers see patients from outside their region. The majority of centers (59.7%) follow 50–199 patients, 21.9% care for more than 200. Most centers provide care in all stages of HD, and nearly all review pre-symptomatic cases. Multidisciplinary case reviews are offered in 54.5% of sites, with outreach clinics offered by 48.1%. Videoconferencing and telemedicine are used by 23.6%. Separate consultations for caregivers are offered in more than half of the centers. Most centers (70.4%) report following published guidelines or local care pathways for HD. Conclusions: Most centers serve a large population and use a multidisciplinary approach. The survey gives insight into factors underpinning HD service delivery globally. There is a need for more in-depth studies of clinical practice to understand how services are organized and how such features may be associated with quality of care. This article is published online with Open Access and distributed under the terms of the Creative Commons Attribution Non-Commercial License.

Background There is a distinct difference between what we know and what we do in healthcare: a gap that is impairing the quality of the care and increasing the costs. Quality improvement efforts have been made worldwide by learning collaboratives, based on recognized continual improvement theory with limited scientific evidence. The present study of 132 quality improvement projects in Norway explores the conditions for improvement from the perspectives of the frontline healthcare professionals, and evaluates the effectiveness of the continual improvement method. Methods An instrument with 25 questions was developed on prior focus group interviews with improvement project members who identified features that may promote or inhibit improvement. The questionnaire was sent to 189 improvement projects initiated by the Norwegian Medical Association, and responded by 70% (132) of the improvement teams. A sub study of their final reports by a validated instrument, made us able to identify the successful projects and compare their assessments with the assessments of the other projects. A factor analysis with Varimax rotation of the 25 questions identified five domains. A multivariate regression analysis was used to evaluate the association with successful quality improvements. Results Two of the five domains were associated with success: Measurement and Guidance (p = 0.011), and Professional environment (p = 0.015). The organizational leadership domain was not associated with successful quality improvements (p = 0.26). Conclusion Our findings suggest that quality improvement projects with good guidance and focus on measurement for improvement have increased likelihood of success. The variables in these two domains are aligned with improvement theory and confirm the effectiveness of the continual improvement method provided by the learning collaborative. High performing professional environments successfully engaged in patient-centered quality improvement if they had access to: (a) knowledge of best practice provided by professional subject matter experts, (b) knowledge of current practice provided by simple measurement methods, assisted by (c) improvement knowledge experts who provided useful guidance on measurement, and made the team able to organize the improvement efforts well in spite of the difficult resource situation (time and personnel). Our findings may be used by healthcare organizations to develop effective infrastructure to support improvement and to create the conditions for making quality and safety improvement a part of everyone’s job.

Bringing new therapies to patients with rare diseases depends in part on optimizing clinical trial conduct through efficient study start-up processes and rapid enrollment. Suboptimal execution of clinical trials in academic medical centers not only results in high cost to institutions and sponsors, but also delays the availability of new therapies. Addressing the factors that contribute to poor outcomes requires novel, systematic approaches tailored to the institution and disease under study.To use clinical trial performance metrics data analysis to select high-performing cystic fibrosis (CF) clinical research teams and then identify factors contributing to their success.Mixed-methods research, including semi-structured qualitative interviews of high-performing research teams.CF research teams at nine clinical centers from the CF Foundation Therapeutics Development Network.Survey of site characteristics, direct observation of team meetings and facilities, and semi-structured interviews with clinical research team members and institutional program managers and leaders in clinical research.Critical success factors noted at all nine high-performing centers were: 1) strong leadership, 2) established and effective communication within the research team and with the clinical care team, and 3) adequate staff. Other frequent characteristics included a mature culture of research, customer service orientation in interactions with study participants, shared efficient processes, continuous process improvement activities, and a businesslike approach to clinical research.Clinical research metrics allowed identification of high-performing clinical research teams. Site visits identified several critical factors leading to highly successful teams that may help other clinical research teams improve clinical trial performance.

We predict self-care will become the new principal source of care. People living with diverse chronic conditions spend more time on self-management than with their providers. The increasing burden of chronic disease and costs coupled with value-based payments and innovative care models will generate a shift away from expensive specialized care toward high-value self-care facilitated by information technology, social support, and clinical expertise. This predicted shift in the value stream carries with it risks and uncertainties but will likely prevail as society seeks to confer "agency" by enabling people to make decisions and engage effectively in care coproduction.

Purpose– Recognition of the importance and difficulty of engaging physicians in organisational change has sparked an explosion of literature. The social identity approach, by considering engagement in terms of underlying group identifications and intergroup dynamics, may provide a framework for choosing among the plethora of proposed engagement techniques. This paper seeks to address this issue.Design/methodology/approach– The authors examined how four disparate organisations engaged physicians in change. Qualitative methods included interviews (109 managers and physicians), observation, and document review.Findings– Beyond a universal focus on relationship-building, sites differed radically in their preferred strategies. Each emphasised or downplayed professional and/or organisational identity as befit the existing level of inter-group closeness between physicians and managers: an independent practice association sought to enhance members' identity as independent physicians; a hospital, engaging community physicians suspicious of integration, stressed collaboration among separate, equal partners; a developing integrated-delivery system promoted alignment among diverse groups by balancing “systemness” with subgroup uniqueness; a medical group established a strong common identity among employed physicians, but practised pragmatic co-operation with its affiliates.Research limitations/implications– The authors cannot confirm the accuracy of managers' perceptions of the inter-group context or the efficacy of particular strategies. Nonetheless, the findings suggested the fruitfulness of social identity thinking in approaching physician engagement.Practical implications– Attention to inter-group dynamics may help organisations engage physicians more effectively.Originality/value– This study illuminates and explains variation in the way different organisations engage physicians, and offers a theoretical basis for selecting engagement strategies.

Context: Scientific and therapeutic advances Remarkable biomedical research advances have led to innovative and increasingly effective therapies. We highlight several scientific milestones in elucidating the pathophysiology of cystic fibrosis (CF) and review the therapies that have become available over the past 20 years. Impact of the quality improvement initiative In 2002, the CF Foundation launched a multifaceted quality improvement initiative to accelerate improvement in CF care. We present evidence of substantial improvement in process measures, such as more consistent outpatient follow-up, and key medical outcomes, including survival, pulmonary function and nutritional status. Critical success factors We offer our perspective on factors critical to the success of the quality improvement initiative, including a compelling strategic plan and the commitment of the CF Foundation to its implementation; the investment in building improvement capacity at CF care centres; the engagement of people with CF and their families as partners; and the integration of quality improvement into the existing CF care framework. Directions for the next decade In addition to a continued investment in building and sustaining improvement capacity at CF care centres, and deeper patient engagement, we will address the oppressive treatment burden. We will also complement the measurement of clinical outcomes with patient reported outcomes and healthcare costs for a balanced assessment of the quality and value of care. Conclusions Major advances in basic science and therapeutic development coupled with improvements in healthcare delivery have resulted in striking gains in medical outcomes for people with CF.