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Purpose: The purpose of this study was to determine how many patients are needed to provide reliable patient ratings of care at the individual clinician level. SETTING AND SOURCES OF DATA: The study was conducted in an academic medical center and was based on analysis of 34,985 patients who completed a 50-item survey rating the care received during a recent outpatient visit to a physician or midlevel provider.Study Design: Analyses of patient satisfaction surveys was done to: 1) confirm the dimensions of satisfaction with outpatient care in an existing measure, and 2) determine the number of patients required to provide reliable estimates of clinician care for single items and an 11-item composite scale.Principal Findings: Factor analysis showed that the survey measured 2 dimensions of satisfaction: 1) clinician care, and 2) features of visiting the office. The 11-item clinician care scale had high reliability (Cronbach's alpha=0.97). The number of patients needed to achieve reliability of 0.80 at the clinician level was 66 for the 11-item scale and ranged from 52 to 91 for individual items. For primary care physicians only, the comparable number of patients per clinician was 77 for the 11-item scale and ranged from 50 to 147 across items.Conclusions: For the survey items that we analyzed, the answer to the question "How many patients are needed to obtain useful and reliable feedback?" is at least 50, but varies by item type (global vs. specific) and by number of items (composite scale or single-item rating) and by the conditions of use (for self-assessment and learning or reward and punishment). [ABSTRACT FROM AUTHOR]

Background: Shared decision making (SDM) is the process by which patients and clinicians exchange information and preferences to come to joint healthcare decisions. Clinical dashboards can support SDM by collecting, distilling, and presenting critical information, such as patient-reported outcomes (PROs), to be shared at points of care and in between appointments. We describe the implementation strategies and outcomes of a multistakeholder collaborative process known as "co-design" to develop a PRO-informed clinical dashboard to support SDM for patients with advanced cancer or chronic kidney disease (CKD). Methods: Across 14 sessions, two multidisciplinary teams comprising patients, care partners, clinicians, and other stakeholders iteratively co-designed an SDM dashboard for either advanced cancer (N = 25) or CKD (N = 24). Eligible patients, care partners, and frontline clinicians were identified by six physician champions. The co-design process included four key steps: (1) define "the problem", (2) establish context of use, (3) build a consensus on design, and (4) define and test specifications. We also evaluated our success in implementing the co-design strategy using measures of fidelity, acceptability, adoption, feasibility, and effectiveness which were collected throughout the process. Results: Mean (M) scores across implementation measures of the co-design process were high, including observer-rated fidelity and adoption of co-design practices (M = 19.1 on a 7–21 scale, N = 36 ratings across 9 sessions), as well as acceptability based on the perceived degree of SDM that occurred during the co-design process (M = 10.4 on a 0 to 12 adapted collaboRATE scale). Capturing the feasibility and adoption of convening multistakeholder co-design teams, min–max normalized scores (ranging from 0 to 1) of stakeholder representation demonstrated that, on average, 95% of stakeholder types were represented for cancer sessions (M = 0.95) and 85% for CKD sessions (M = 0.85). The co-design process was rated as either "fully" or "partially" effective by 100% of respondents, in creating a dashboard that met its intended objective. Conclusions: A co-design process was successfully implemented to develop SDM clinical dashboards for advanced cancer and CKD care. We discuss key strategies and learnings from this process that may aid others in the development and uptake of patient-centered healthcare innovations. [ABSTRACT FROM AUTHOR]

The aim of this article is to introduce key concepts and approaches for building a better practice-based measurement. Physicians are being challenged to produce measurably higher quality of services, lower costs, and better clinical outcomes to remain viable. In the absence of providerdriven practice improvements and independent measurement systems, office practices will remain dependent on performance data from external forces as drivers of change. Three key questions will be addressed in our pursuit of better measurement systems for continuous improvement and competitive advantage: (1) What do we want a measurement system to tell us in the first place? (2) What might an idealized measurement system look like if we had one? (3) What are some of the challenges that office practices face in closing the gap between building an idealized measurement system and the current state of office practice measurement? [ABSTRACT FROM AUTHOR]

Abstract: We conducted a trial to evaluate the impact of medical self-care education on 330 elders whose average age was 71. The test group participated in a 13-session educational intervention with training in clinical medicine, life-style, and use of health services. The comparison group received a two-hour lecture-demonstration. Both groups were assessed pre-intervention, post-intervention, and one year after entry. The rest. Its indicate medical self-care instruction: produces substantial improvements, that were sustained for one year, in health knowledge, skills performance, and skills confidence; stimulates many attempts to improve life-style, and generates improvements in life quality. The program had little influence on utilization of medical care or hearth status. [ABSTRACT FROM AUTHOR]

Presents information on a study of patients with chronic disease while comparing inpatient and outpatient utilization rates between prepaid (PPD) and fee-for-service (FFS) insurance coverage for these patients. Collection of data from the Medical Outcomes Study; Information on a longitudinal observational study of chronic disease patients; Whom was the study conducted by; Detailed information on the methods; Examination of the results.

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]

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. [ABSTRACT FROM AUTHOR]

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. [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]

• A visual dashboard was co-designed by people living with CF and clinicians to support patient-clinician partnerships. • Two-thirds of people living with CF used the dashboard during a clinic visit, and three-fifths used it outside a clinic visit. • Most people living with CF (92%) used the dashboard to view clinical trends, including their registry data. • Most clinicians (76%) used the dashboard to support visit planning, and view patient concerns and requests. • Embedding data streams within existing information technology tools is critical, and was identified as a theme by each care team. 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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Context: It is widely hoped that accountable care organizations (ACOs) will improve health care quality and reduce costs by fostering integration among diverse provider groups. But how do implementers actually envision integration, and what will integration mean in terms of managing the many social identities that ACOs bring together? Methods: Using the lens of the social identity approach, this qualitative study examined how four nascent ACOs engaged with the concept of integration. During multiday site visits, we conducted interviews (114 managers and physicians), observations, and document reviews. Findings: In no case was the ACO interpreted as a new, overarching entity uniting disparate groups; rather, each site offered a unique interpretation that flowed from its existing strategies for social-identity management: An independent practice association preserved members' cherished value of autonomy by emphasizing coordination, not 'integration'; a medical group promoted integration within its employed core, but not with affiliates; a hospital, engaging community physicians who mistrusted integrated systems, reimagined integration as an equal partnership; an integrated delivery system advanced its careful journey towards intergroup consensus by presenting the ACO as a cultural, not structural, change. Conclusions: The ACO appears to be a model flexible enough to work in synchrony with whatever social strategies are most context appropriate, with the potential to promote alignment and functional integration without demanding common identification with a superordinate group. 'Soft integration' may be a promising alternative to the vertically integrated model that, though widely assumed to be ideal, has remained unattainable for most organizations. [ABSTRACT FROM AUTHOR]

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: Depression is common in Parkinson's disease (PD) but is underrecognized clinically. Although systematic screening is a recommended strategy to improve depression recognition in primary care practice, it has not been widely used in PD care., Methods: The 15-item Geriatric Depression Scale (GDS-15) was implemented at 5 movement disorders clinics to screen PD patients. Sites developed processes suited to their clinical workflow. Qualitative interviews with clinicians and patients provided information on feasibility, acceptability, and perceived utility., Results: Prior to implementation, depression screening was recorded in 12% using a formal instrument; 64% were screened informally by clinical interview, and no screening was recorded in 24%. Of 1406 patients seen for follow-up care during the implementation period, 88% were screened, 59% using the GDS-15 (self-administered in 51% and interviewer administered in 8%), a nearly 5-fold increase in formal screening. Lack of clinician or staff time and inability to provide the GDS-15 to the patient ahead of the visit were the most commonly cited reasons for lack of screening using the GDS-15; 378 (45%) patients completing the GDS-15 screened positive for depression, and 137 were enrolled for a 12-month prospective follow-up. Mean GDS-15 scores improved from 8.8 to 7.0 (P < 0.0001) and the 39-item Parkinson's Disease Questionnaire emotional subscore from 42.2 to 36.7 (P = 0.0007)., Conclusions: Depression screening in PD using a formal instrument can be achieved at much higher levels than is currently practiced, but there are barriers to implementing this in clinical practice. An individual site-specific process is necessary to optimize screening rates., (© 2024 The Author(s). Movement Disorders Clinical Practice published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.)

Background: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available., Objective: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement., Methods: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network., Results: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period., Conclusions: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network., (©Elizabeth A O’Donnell, Aricca D Van Citters, Inas S Khayal, Matthew M Wilson, David Gustafson, Amber E Barnato, Andrea C Buccellato, Colleen Young, Megan M Holthoff, Eugene Korsunskiy, Stephanie C Tomlin, Amelia M Cullinan, Alexandra C Steinbaugh, Jennifer J Hinson, Kristen R Johnson, Andrew Williams, Ruth M Thomson, Janet M Haines, Anne B Holmes, Ann D Bradley, Eugene C Nelson, Kathryn B Kirkland. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 08.05.2024.)

Background: Maternity care services in the United Kingdom have undergone drastic changes due to pandemic-related restrictions. Prior research has shown maternity care during the pandemic was negatively experienced by women and led to poor physical and mental health outcomes in pregnancy. A synthesis is required of published research on women's experiences of maternity care during the latter half of the COVID-19 pandemic., Aim: To update a previous systematic review of maternity care experiences during the pandemic to June 2021, exploring experiences of maternity care specifically within the United Kingdom and how they may have changed, in order to inform future maternity services., Methods: A systematic review of qualitative literature was conducted using comprehensive searches of five electronic databases and the Cochrane COVID Study Register, published between 1 June 2021 and 13 October 2022, and further updated to 30 September 2023. Thematic Synthesis was utilised for data synthesis., Findings: Of 21,860 records identified, 27 studies were identified for inclusion. Findings included 14 descriptive themes across the five core concepts: (1)Care-seeking and experience; (2)Virtual care; (3)Self-monitoring; (4)COVID-19 vaccination; (5)Ethical future of maternity care., Discussion: Our findings in the UK are consistent with those globally, and extend those of the previous systematic review, particularly about women's perceptions of the COVID-19 vaccine during pregnancy., Conclusion: Our findings suggest the following are important to women for future maternity care: personalisation and inclusiveness; clear and evidence-based communication to facilitate informed decision-making; and achieving balance between social commitments and time spent settling into motherhood., Competing Interests: Declaration of Competing Interest Six studies included in the qualitative evidence synthesis were authored by at least one member of the review team (SAS, LAM, PvD, or the wider RESILIENT Study Group). However, data extraction, quality assessment, and synthesis of these papers were not conducted by any of these authors, rather by TD and GH who have no competing interests. The RESILIENT Study has been adopted by the National Institute for Health and Care Research Applied Research Collaboration South London [NIHR ARC South London] at King’s College Hospital NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: Dashboards can support person-centered care by helping people partner with their clinicians to coproduce care based on preferences, shared decision-making, and evidence-based treatments. We engaged caregivers of children with juvenile idiopathic arthritis (JIA), adults with rheumatoid arthritis (RA), and clinicians in a pilot study to assess their experiences and the utility and impact of an electronic previsit questionnaire and point-of-care dashboard to support coproduction of rheumatology care., Methods: We employed a mixed-methods design to assess users' perceptions of a customized electronic health record rheumatology module at four pediatric rheumatology practices and two adult rheumatology practices. We surveyed a convenience sample of caregivers of children with JIA (n = 113), adults with RA (n = 116), and clinicians (n = 12). We conducted semistructured interviews with 13 caregivers and patients and six care teams. Experiences were evaluated using descriptive statistics and thematic analyses., Results: Caregivers of children with JIA and adults with RA reported the dashboards were useful during discussions (88%) and helped them talk about what mattered most (82%), make health care decisions (83%), and create a treatment plan (77%). Clinicians provided similar feedback. Two-thirds (67%) of caregivers and adults and 55% of clinicians would recommend the dashboard to peers. System usability scores (77.1 ± 15.6) were above average. Dashboards helped users make sense of health information, communicate more effectively, and make decisions. Improvements to the dashboards and workflows could enhance patient self-management and clinician efficiency., Conclusion: Visual point-of-care dashboards can support caregivers, patients, and clinicians to coproduce rheumatology care. Findings demonstrate a need to spread and scale for broader benefit and impact., (© 2023 The Authors. ACR Open Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology.)

The coproduction learning health system (CLHS) model extends the definition of a learning health system to explicitly bring together patients and care partners, health care teams, administrators, and scientists to share the work of optimizing health outcomes, improving care value, and generating new knowledge. The CLHS model highlights a partnership for coproduction that is supported by data that can be used to support individual patient care, quality improvement, and research. We provide a case study that describes the application of this model to transform care within an oncology program at an academic medical center., Competing Interests: No conflicts of interest have been declared relating to the manuscript., (Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc.)

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., Competing Interests: Authors Bruce C. Marshall and Kathryn A. Sabadosa are employees of the Cystic Fibrosis Foundation. The authors state they have no conflicts of interest., (© 2022 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of University of Michigan.)