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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., Competing Interests: Declaration of Competing Interest KAS, AF, BCM are employees of the Cystic Fibrosis Foundation. ECN received grant funding from the Cystic Fibrosis Foundation (NELSON20QI0)., (Copyright © 2021. Published by Elsevier B.V.)

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., Competing Interests: Declaration of Competing Interest Jordan Dunitz, Adrienne Savant, Brooke Moore, Michelle Prickett, Terri Laguna, Cindy Brady, Morgan Soper, Sarah Jain, and Whitney Gore report grant subcontracts from Dartmouth College to conduct work associated with design and pilot-testing of CFHC. Eugene Nelson, Kathryn Sabadosa, and Aricca Van Citters report grant funding from the Robert Wood Johnson Foundation and Cystic Fibrosis Foundation. Alex Gifford reports grant funding from the Cystic Fibrosis Foundation. Terri Laguna reports grant funding from the Cystic Fibrosis Foundation and the National Institutes of Health, is a grant reviewer for the Cystic Fibrosis Foundation and a member of a National Institute of Health study section; and receives an honorarium for participating on a Physician Advisory Board for Vertex Pharmaceuticals. Eugene Nelson owns stock in Quality Data Management (QDM). Bruce Marshall, Jonathan Flath, Madeline Elmhirst, and Maureen Riordan report no conflicts of interest., (Copyright © 2020. Published by Elsevier B.V.)

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: 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., Objective: 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., Design: Mixed-methods research, including semi-structured qualitative interviews of high-performing research teams., Participants: CF research teams at nine clinical centers from the CF Foundation Therapeutics Development Network., Approach: 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., Key Results: 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., Conclusions: 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.

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.

Objective: The purpose of this study was to develop a cystic fibrosis (CF)-specific patient and family experience of care survey that CF care centers could use to inform quality improvement efforts., Methods: A literature search and query of CF care centers was conducted to identify existing surveys. Individuals with CF, their families, and health care professionals were also asked what to include. Following this process, a draft survey was developed and then reviewed by focus groups. Finally, a version was piloted at 25 CF care centers to validate and further refine the instrument., Results: No CF-specific surveys were found in the literature. Focus group participants stated that they understood the survey questions and that they covered important aspects of care, particularly infection control. The pilot test of the instrument with 485 participants supported its validity by demonstrating significant differences across centers and that most of the 3 care dimensions had acceptable internal consistency (Cronbach α: adults, 0.71-0.85; children, 0.68-0.79)., Conclusion: A CF-specific patient and family experience of care survey was developed with input from individuals with CF, their families, and health care professionals. The instrument was validated and has been deployed to CF care centers.

Introduction: The Cystic Fibrosis (CF) Foundation sponsored the design, pilot testing, and implementation of the CF Learning Network (CFLN) to explore how the Foundation's Care Center Network (CCN) could become a learning health system. Six years after the design, the Foundation commissioned a formative mixed methods evaluation of the CFLN to assess: CFLN participants' understanding of program goals, attributes, and perceptions of current and future impact. Methods: We performed semi‐structured interviews with CFLN participants to identify perceived goals, attributes, and impact of the network. Following thematic analyses, we developed and distributed a survey to CFLN members and a matched sample of CCN programs to understand whether the themes were unique to the CFLN. Results: Interviews with 24 CFLN participants were conducted. Interviewees identified the primary CFLN goal as improving outcomes for people living with CF, with secondary goals of providing training in quality improvement (QI), creating a learning community, engaging all stakeholders in improvement, and spreading best practices to the CCN. Project management, use of data, common QI methods, and the learning community were seen as critical to success. Survey responses were collected from 103 CFLN members and 25 CCN members. The data revealed that CFLN respondents were more likely than CCN respondents to connect with other CF programs, routinely use data for QI, and engage patient and family partners in QI. Conclusions: Our study suggests that the CFLN provides value beyond that achieved by the CCN. Key questions remain about whether spread of the CFLN could improve outcomes for more people living with CF. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Aim To investigate health care improvement team coaching activities from the perspectives of coachees, coaches and unit leaders in two national improvement collaboratives. Background Despite numerous methods to improve health care, inconsistencies in success have been attributed to factors that include unengaged staff, absence of supportive improvement resources and organisational inertia. Methods Mixed methods sequential exploratory study design, including quantitative and qualitative data from interprofessional improvement teams who received team coaching. The coachees ( n = 382), coaches ( n = 9) and leaders ( n = 30) completed three different data collection tools identifying coaching actions perceived to support improvement activities. Results Coachees, coaches and unit leaders in both collaboratives reported generally positive perceptions about team coaching. Four categories of coaching actions were perceived to support improvement work: context, relationships, helping and technical support. Conclusions All participants agreed that regardless of who the coach is, emphasis should include the four categories of team coaching actions. Implications for nursing management Leaders should reflect on their efforts to support improvement teams and consider the four categories of team coaching actions. A structured team coaching model that offers needed encouragement to keep the team energized, seems to support health care improvement. [ABSTRACT FROM AUTHOR]