The uses of Patient Reported Experience Measures in health systems: A systematic narrative review.

BACKGROUND: Many governments have programmes collecting and reporting patient experience data, captured through Patient Reported Experience Measures (PREMs). Our study aims to capture and describe all the ways in which PREM data are used within healthcare systems, and explore the impacts of using PREMs at one level (e.g. national health system strategy) on other levels (e.g. providers). METHODS: We conducted a narrative review, underpinned by a systematic search of the literature. RESULTS: 1,711 unique entries were identified through the search process. After abstract screening, 142 articles were reviewed in full, resulting in 28 for final inclusion. A majority of papers describe uses of PREMs at the micro level, focussed on improving quality of front-line care. Meso-level uses were in quality-based financing or for performance improvement. Few macro-level uses were identified. We found limited evidence of the impact of meso­ and macro- efforts to stimulate action to improve patient experience at the micro-level. CONCLUSIONS: PREM data are used as performance information at all levels in health systems. The use of PREM data at macro- and meso­ levels may have an effect in stimulating action at the micro-level, but there is a lack of systematic evidence, or evaluation of these micro-level actions. Longitudinal studies would help better understand how to improve patient experience, and interfaces between PREM scores and the wider associated positive outcomes.

A Comparison of Census and Cohort Sampling Models for the Longitudinal Collection of User-Reported Data in the Maternity Care Pathway: Mixed Methods Study.

BACKGROUND: Typical measures of maternity performance remain focused on the technical elements of birth, especially pathological elements, with insufficient measurement of nontechnical measures and those collected pre- and postpartum. New technologies allow for patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) to be collected from large samples at multiple time points, which can be considered alongside existing administrative sources; however, such models are not widely implemented or evaluated. Since 2018, a longitudinal, personalized, and integrated user-reported data collection process for the maternal care pathway has been used in Tuscany, Italy. This model has been through two methodological iterations. OBJECTIVE: The aim of this study was to compare and contrast two sampling models of longitudinal user-reported data for the maternity care pathway, exploring factors influencing participation, cost, and suitability of the models for different stakeholders. METHODS: Data were collected by two modes: (1) "cohort" recruitment at the birth hospital of a predetermined sample size and (2) continuous, ongoing "census" recruitment of women at the first midwife appointment. Surveys were used to collect experiential and outcome data related to existing services. Women were included who passed 12 months after initial enrollment, meaning that they either received the surveys issued after that interval or dropped out in the intervening period. Data were collected from women in Tuscany, Italy, between September 2018 and July 2020. The total sample included 7784 individuals with 38,656 observations. The two models of longitudinal collection of user-reported data were analyzed using descriptive statistics, survival analysis, cost comparison, and a qualitative review. RESULTS: Cohort sampling provided lower initial participation than census sampling, although very high subsequent response rates (87%) were obtained 1 year after enrollment. Census sampling had higher initial participation, but greater dropout (up to 45% at 1 year). Both models showed high response rates for online surveys. There were nonproportional dropout hazards over time. There were higher rates of dropout for women with foreign nationality (hazard ratio [HR] 1.88, P<.001), and lower rates of dropout for those who had a higher level of education (HR 0.77 and 0.61 for women completing high school and college, respectively; P<.001), were employed (HR 0.87, P=.01), in a relationship (HR 0.84, P=.04), and with previous pregnancies (HR 0.86, P=.002). The census model was initially more expensive, albeit with lower repeat costs and could become cheaper if repeated more than six times. CONCLUSIONS: The digital collection of user-reported data enables high response rates to targeted surveys in the maternity care pathway. The point at which pregnant women or mothers are recruited is relevant for response rates and sample bias. The census model of continuous enrollment and real-time data availability offers a wider set of potential benefits, but at an initially higher cost and with the requirement for more substantial data translation and managerial capacity to make use of such data.

Features Constituting Actionable COVID-19 Dashboards: Descriptive Assessment and Expert Appraisal of 158 Public Web-Based COVID-19 Dashboards.

BACKGROUND: Since the outbreak of COVID-19, the development of dashboards as dynamic, visual tools for communicating COVID-19 data has surged worldwide. Dashboards can inform decision-making and support behavior change. To do so, they must be actionable. The features that constitute an actionable dashboard in the context of the COVID-19 pandemic have not been rigorously assessed. OBJECTIVE: The aim of this study is to explore the characteristics of public web-based COVID-19 dashboards by assessing their purpose and users ("why"), content and data ("what"), and analyses and displays ("how" they communicate COVID-19 data), and ultimately to appraise the common features of highly actionable dashboards. METHODS: We conducted a descriptive assessment and scoring using nominal group technique with an international panel of experts (n=17) on a global sample of COVID-19 dashboards in July 2020. The sequence of steps included multimethod sampling of dashboards; development and piloting of an assessment tool; data extraction and an initial round of actionability scoring; a workshop based on a preliminary analysis of the results; and reconsideration of actionability scores followed by joint determination of common features of highly actionable dashboards. We used descriptive statistics and thematic analysis to explore the findings by research question. RESULTS: A total of 158 dashboards from 53 countries were assessed. Dashboards were predominately developed by government authorities (100/158, 63.0%) and were national (93/158, 58.9%) in scope. We found that only 20 of the 158 dashboards (12.7%) stated both their primary purpose and intended audience. Nearly all dashboards reported epidemiological indicators (155/158, 98.1%), followed by health system management indicators (85/158, 53.8%), whereas indicators on social and economic impact and behavioral insights were the least reported (7/158, 4.4% and 2/158, 1.3%, respectively). Approximately a quarter of the dashboards (39/158, 24.7%) did not report their data sources. The dashboards predominately reported time trends and disaggregated data by two geographic levels and by age and sex. The dashboards used an average of 2.2 types of displays (SD 0.86); these were mostly graphs and maps, followed by tables. To support data interpretation, color-coding was common (93/158, 89.4%), although only one-fifth of the dashboards (31/158, 19.6%) included text explaining the quality and meaning of the data. In total, 20/158 dashboards (12.7%) were appraised as highly actionable, and seven common features were identified between them. Actionable COVID-19 dashboards (1) know their audience and information needs; (2) manage the type, volume, and flow of displayed information; (3) report data sources and methods clearly; (4) link time trends to policy decisions; (5) provide data that are "close to home"; (6) break down the population into relevant subgroups; and (7) use storytelling and visual cues. CONCLUSIONS: COVID-19 dashboards are diverse in the why, what, and how by which they communicate insights on the pandemic and support data-driven decision-making. To leverage their full potential, dashboard developers should consider adopting the seven actionability features identified.