Background: Attending to patient-reported outcomes (PROs) using data visualisation dashboards could enhance shared decision-making (SDM) and care delivery for serious chronic illnesses. However, few studies have evaluated real-world strategies and resulting implementation outcomes of PRO dashboards.
Method: From June 2020 to January 2022, we implemented an electronic health record (EHR)-integrated PRO dashboard for advanced cancer and chronic kidney disease.
Problem And Background: During the COVID-19 pandemic, there was substantial reconfiguration of maternity care services, affecting both users and healthcare providers (HCPs), in the United Kingdom (UK) and globally.
Aim: To further our understanding of the impact of maternity service reconfigurations in the UK, from the perspective of maternity HCPs.
Methods: Scopus, MEDLINE, EMBASE, CINAHL, PsycINFO and the Cochrane COVID Study Register were searched for relevant studies reporting qualitative data from the UK, published in English between 01 June 2021 and 30 September 2023.
Maternal vaccination during pregnancy, in general and against COVID-19 infection, offers protection to both mother and baby, but uptake remains suboptimal. This study aimed to explore the perceptions regarding COVID-19 vaccination in pregnancy, particularly for marginalised populations and those living with social or medical complexity. A total of 96 semi-structured in-depth interviews were conducted with 40 women, 15 partners, 21 HCPs, and 20 policy makers, across all four nations of the United Kingdom (UK), discussing their lived experience of utilising, delivering, or developing policy for COVID-19 vaccination in pregnancy during the pandemic.
View Article and Find Full Text PDFObjectives: 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.
Mov Disord Clin Pract
October 2024
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.
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.
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.
View Article and Find Full Text PDFIntroduction: 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.
Background: Skillful communication with attention to patient and care partner priorities can help people with serious illnesses. Few patient-facing agenda-setting tools exist to facilitate such communication.
Objective: To develop a tool to facilitate prioritization of patient and care partner concerns during serious illness visits.
Objective: Determine differences in utilization patterns, disease severity, and outcomes between patients with and without diabetes mellitus diagnosed with COVID-19 in 2020.
Research Design And Methods: We used an observational cohort comprised of Medicare fee-for-service beneficiaries with a medical claim indicating a COVID-19 diagnosis. We performed inverse probability weighting between beneficiaries with and without diabetes to account for differences in socio-demographic characteristics and comorbidities.
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.
J Ambul Care Manage
February 2023
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.
View Article and Find Full Text PDFBackground: 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.
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.
View Article and Find Full Text PDFBackground: Despite progress in developing learning health systems (LHS) and associated metrics of success, a gap remains in identifying measures to guide the implementation and assessment of the impact of an oncology LHS. Our aim was to identify a balanced set of measures to guide a person-centered oncology LHS.
Methods: A modified Delphi process and clinical value compass framework were used to prioritize measures for tracking LHS performance.
Background: The coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences, to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision-making. Increasing communication between patients and care teams is particularly important for children with chronic conditions.
View Article and Find Full Text PDFThe 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.
View Article and Find Full Text PDFBackground: 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.
View Article and Find Full Text PDFBackground: 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.
View Article and Find Full Text PDFIntroduction: 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.
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.
View Article and Find Full Text PDFIntroduction: 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.
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.
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