key: cord-0997363-9n42myyp authors: Cardinali, Flavia; Carzaniga, Sara; Duranti, Giorgia; Labella, Barbara; Lamanna, Alessandro; Cerilli, Micaela; Caracci, Giovanni; Carinci, Fabrizio title: A nationwide participatory programme to measure person‐centred hospital care in Italy: Results and implications for continuous improvement date: 2021-05-20 journal: Health Expect DOI: 10.1111/hex.13231 sha: f8a65b87291dedb7fe5326c6a0f7d70e2542b749 doc_id: 997363 cord_uid: 9n42myyp BACKGROUND: Patient‐centredness has been targeted by the Italian government as a key theme for the future development of health services. OBJECTIVE: Measuring patient‐centred health services in partnership with citizens, health professionals and decision makers. DESIGN: National participatory survey in a large test set of hospitals at national level. SETTING AND PARTICIPANTS: A total of 387 hospital visits conducted in 16 Italian regions by over 1,500 citizens and health professionals during 2017‐2018. MAIN VARIABLES AND OUTCOME MEASURES: An ad hoc checklist was used to assess person‐centredness in hospital care through 243 items, grouped in 4 main areas, 12 sub‐areas and 29 person‐centred criteria (scored 0‐10). GEE linear multivariate regression was used to explore the relation between hospital characteristics and person‐centredness. RESULTS: Person‐centred scores were moderately high, with substantial variation overall (median score: 7.0, range: 3.2‐9.5) and by area (Care Processes: 6.8, 2.0‐9.8; Access: 7.4, 2.7‐9.7; Transparency: 6.7, 3.4‐9.5 and Relationship: 7.3, 0.8‐10.0). Multivariate regression found higher scores for increasing volumes of activity (quartile increase: +0.21; 95% CI: 0.13, 0.29) and lower scores in the south and islands (−1.03; −1.62,‐0.45). DISCUSSION: The checklist has been applied successfully by over 1,500 collaborators who assessed hospitals in 16 distinct Regions and Autonomous Provinces of Italy. Despite an overall positive mark, all scores were highly variable by location and hospital characteristics. CONCLUSION AND PATIENT OR PUBLIC CONTRIBUTION: A national participatory programme to improve patient‐centredness in Italian hospitals highlighted critical areas with the direct input of citizens. The goal of person-centredness has become increasingly popular in the organization of health services. Since its initial definition as one of the six main pillars of quality of care, 1 various concepts and models have been introduced to assess it routinely, [2] [3] [4] [5] [6] [7] [8] [9] using specific tools to monitor the personal domains of physical, psychological and social needs in primary, secondary and tertiary clinical settings. 10, 11 Relevant experiences addressed the importance of citizen involvement in the direct evaluation of services, embracing the concept of end-user co-design, particularly in hospitals. [12] [13] [14] [15] [16] [17] [18] Following these experimental initiatives, international organizations have recently recognized the role of person-centredness as a key driver for the sustainability of health systems. In 2016, the WHO called on Member States to promote an approach to care that 'consciously adopts individuals', carers', families' and communities' perspectives as participants in, and beneficiaries of, trusted health systems that are organized around the comprehensive needs of people'. 19, 20 At the same time, the OECD released a new framework for performance evaluation including patient-centredness as one of the tree key dimensions of quality, 21 presented as the main theme in the Ministerial Conference where Member States agreed that 'healthcare systems need to engage patients as active players in improving health care'. 22 Relevant developments took place in parallel to strengthen the Italian National Health System (Sistema Sanitario Nazionale, SSN). In 2012, the Italian Ministry of Health and the Regions and Autonomous Provinces agreed common terms for the accreditation of health-care facilities, incorporating patient-centred care as an essential quality criterion. 23 Two years later, building upon the OECD recommendation of increasing the direct participation of citizens in quality assurance, 24 The agreement included the implementation of specific interventions to foster patient-centred care across the country in a balanced way, calling upon the National Agency for Regional Health Services (AGENAS) to develop a set of core indicators to monitor the results of these interventions. At the same time, relevant activities of patient involvement were carried out by different Regions and Autonomous Provinces. These developments increased the need of improving the comparability of person-centred care at national level. 25 Consequently, AGENAS defined a set of materials and protocols to undertake a national survey on person-centredness in Italian hospitals. In this paper, we present the results of this activity, focussing on the following research questions: • Can we measure person-centredness at hospital level using the same standardised tool across the country, with the active participation of citizens, health professionals and decision makers? • Which features of person-centredness are widely applied, and which others deserve increased attention? Is there any significant variation across the country and/or potential association with hospital characteristics? The study was carried out between 2016 and 2018 in the context of a multi-year programme financed with infrastructural funds available from the general mandate assigned by the Ministry of Health to AGENAS. The project stems from a collaboration started in 2011, when AGENAS established a Project Team, an Advisory Board and the Regional Network of experts to agree on a common definition of patient centredness. The Project Team formed at AGENAS included authors of this paper with a multidisciplinary background in medicine, public health, psychology, sociology and biostatistics. The role of the Project Team was to coordinate the conduct of a national survey to measure person-centredness in Italian hospitals through the use of a standardized assessment tool. For executing the project, the Project Team cooperated with the Regional Network, including 34 representatives of Regions and Autonomous Provinces involved in activities of patient empowerment, and the Advisory Board, including experts in the field of civic evaluation of health services from the non-profit consumer organization 'Cittadinanzattiva'. The lists of members of the Advisory Board and Regional Network are included in the acknowledgements section together with their affiliations. In August 2011, the Project Team reviewed the scientific and grey literature to identify the main documents reporting on patientcentredness in health care from the point of view of care providers, research organizations, citizens and patient organizations at national and international level. Relevant regional and national Italian regulations were also considered for the scope. The documents were discussed with members of the Advisory Board, who provided guidance on their use in the context of the civic evaluation of quality in hospital care. We found substantial heterogeneity in the terminology and interpretation of the concept of 'centredness', reflecting the background of different professional disciplines, perspectives and clinical settings, in the context of specific regional settings. 26 Consequently, we adopted a holistic vision 10 to define personcentredness as 'the commitment to orient the setting of care, diagnostic and therapeutic programmes as much as possible towards the person, considered in all inherent physical, social and psychological aspects'. 27 The structure of the survey tool was defined between October 2011 and June 2012 as a 'checklist' aimed at measuring compliance to the stated principles using multiple items, whose values could be conveniently added up to compute summary scores for specific aspects of interest. The checklist included four major areas of patient centeredness in acute care: person-oriented organizational and care processes, physical accessibility and comfort, access to information and transparency, citizen-patient professional relationship. Consensus over the final structure was reached after two rounds of comments received from members of the Regional Network in terms of conceptual coherence, coverage of relevant aspects and overall clarity of the terms utilized. The final 'checklist' adopted for the national survey included the above mentioned 4 areas, subdivided into 12 sub-areas, 29 criteria and 243 items. The majority of items were dichotomous, indicating presence/absence of selected characteristics (coded as 0/10), except for cases where the questions allowed ordinal responses (coded from 0 to the number of levels). Missing data were not allowed, except for items classified as 'not applicable'. An example of items, scores and explanatory notes included in the checklist is shown in Table 1 . Briefly, the value assigned to each item was based on the examination of different type of materials: along with additional explanatory notes. The details of all components of the checklist, including the description of the single items and the range of their possible values, are attached to the present publication as Appendix S1. We further assessed the level of correlation between criteria, sub-areas and areas included in the checklist to ensure that no redundant items were included (results not shown). The protocol of the data collection procedure included a series of steps, underpinned by three guiding principles: empowerment of citizens and health professionals, humanization of care and continuous quality improvement (see Figure 1 ). Each participating Region/Autonomous Province was requested to form a Regional Coordination Group, including members of the Regional Network, supported by regional referents of hospital managers, professionals and citizens. The Regional Coordination Group was put in charge of enrolling hospitals and coordinating the survey in each region, while hospitals were requested to form a Local Team, including local referents of health professionals and citizens. The Project Team provided each Regional Coordination Group with standardized training materials including the programme, slides and guides for implementing the protocol. Subsequently, the In All summary scores by criteria, area and sub-area were normalized on a numeric scale ranging between 0 and 10, with 0 corresponding to the lack or absence of requirement and 10 to complete fulfilment. All analyses were stratified by macroregion (north, centre or south), type of hospital (public, trust, private and academic/research) and volume of activities (determined as a proxy by their quartile in the ordered ranking of number of beds). Descriptive statistics included the calculation of percentages and medians and ranges for variables that were not normally distributed according to the Shapiro-Wilk test. 31 Results were stratified by area, sub-area and overall, according to the categories above. Histograms were used to examine the distribution of scores within and between classes. Multivariate linear regression was used to formally test the sta- All analyses were carried out by AGENAS using R. 34 The main characteristics of the study sample, compared to all Italian hospitals in year 2017, are presented in Table 2 . Therefore, we presented all descriptive results consistently as median scores (range) for criteria, sub-areas and overall (see Table 3 ). Overall, hospitals achieved moderate levels of personcentredness, with a median score equal to 7.0 (3.2-9.5). In terms of criteria, the maximum median score of 10 was achieved by 'personal anonymity', 'signposting and internal pathways', 'child-friendly wards', 'simplified access to services' and 'reception'. A high mark was also reached for 'taking on commitments towards citizens'. However, scores for all the above criteria were also quite variable, ranging from 0 to 10. Scores were less variable at the macrolevel of sub-area, which could be explained by the fact that hospitals did not consistently achieve systematically higher or lower scores across different criteria. As the sums involved a higher number of items, results over multiple criteria had a tendency to regress towards the mean. The maximum median score was achieved by 'overall comfort'. The sub-areas of 'person-oriented wards' and 'relationship with citizens' presented a median at best one mark below the overall median. The level of correlation between sub-areas showed levels of correlation between 0.09 and 0.64, confirming the relevance of all items included in the checklist (detailed results not shown). Table 4 shows the distribution of area scores for specific categories of hospitals and overall. Median scores achieved for single areas did not differ substantially from the overall median, although 'physical accessibility' achieved a clearly higher score (7.4, 2.7-9.7), immediately followed by 'relationship', which was also very variable (7.3, 0.8-10.0). For specific categories, we found that northern regions presented consistently higher scores, while hospital trusts and public hospitals were consistently lower. The only exceptions were 'relationships for hospital trusts' (7.9, 0.8-9.6) and 'transparency for public hospitals' (6.8, 4.0-9.5). Hospitals in the lower quartiles of the distribution of number of beds showed invariably lower scores for all areas and overall. The examination of histograms highlighted a potentially significant linear relation (see Figure 2 ). The statistical significance of this relation was formally tested in a series of multivariate linear regression models, whose compliance with fundamental assumptions showed to be problematic (see Table 5 ). Consistently with the non-normality of the outcome variable, we found that the residuals were almost in all cases not normally distributed and heteroskedastic. Given the large sample, we considered non-normality of the residuals as a minor problem and focussed more on heteroskedasticity. 36 Sensitivity analysis showed that heteroskedasticity could be resolved by excluding the macroregions from the set of covariates. Nevertheless, there was still a moderate degree of autocorrelation between residuals, ranging between 0.27 and 0.45. Therefore, we used generalized estimating equations as an appropriate means to take into account the intra-regional cluster effect caused by the same Local Team being involved in multiple hospital visits. The values of exchangeable correlation ranging between 0.21 and 0.30 in the GEE models confirmed this assumption. The GEE confidence intervals were considerably wider than those obtained by multivariate linear regression, turning several terms into non-significant. The results obtained from the application of GEE models are shown in Table 6 . Briefly In terms of volumes of activity, after adjusting for all the above characteristics, we found that the average difference between adjacent quartiles was significantly associated with increased levels of Overall, an increase of one quartile in terms of hospital volume was associated with an average increase in the score of patientcentredness equal to +0.21 (0.13 to 0.29). In other terms, regardless of the region or type of hospital, the average difference between hospitals in the highest vs lowest quartile of volume of activity is equal to 60% of one mark of patient-centredness out of a scale of ten. The results of the first nationwide survey coordinated by AGENAS allowed responding to our initial set of research questions. Regarding measurement of the person-centredness of hospital care, our results suggest the applicability of a novel tool that is appropriate to use in similar settings, for the same purpose. The checklist was applied successfully by over 1,500 collaborators who assessed hospitals in 16 distinct Regions and Autonomous TA B L E 4 Scores achieved (median, range) for specific categories of hospitals, by centeredness area and overall Average Scores Achieved Therefore, the derived measures of person-centredness can be also actionable. 21 However, we did not include the details of service improvement plans in the scope of the project. AGENAS is currently engaged in research aimed at defining methods and tools to monitor progress of co-designed improvement plans. We are confident that this step will complete the creation of a National Monitoring System for Person-Centred Hospital Care that will incorporate the participatory process as a key component of the continuous improvement cycle. Regarding our second question on the differences observed across the country, despite an overall positive mark, we found that all scores were highly variable. Single criteria clearly showed that In 2020, while preparing the present report, the outbreak of Results for statistically significant covariates are shown in bold. Our approach was aimed at testing the significance of any relation, for example the independent association between hospital size and total scores of patient centredness, taking the main potential confounders into account. Further work will be required to collect all relevant characteristics, within improved information infrastructure 60 to collect data in compliance with the most current legislation on privacy and data protection. 61 We conducted a nationwide participatory programme for the evalu- in the complex scenario of decentralized governance. 52, 62 The necessary link with patient safety and co-designed planning may represent a useful learning process for other countries experiencing the same problems. The present paper would have not been produced without the Vitale. We thank the following representatives of the R&AP from the Regional Network (RN) and the Regional Coordination Group questionnaire and led the study on behalf of AGENAS. GD and FC conducted the statistical analysis for the paper. FC led the production of the paper, drafting its initial version. All authors revised and completed the production of the manuscript, revising and agreeing on its present contents. This study has been conducted with the direct participation of policymakers, patients and the public, as described in the section on materials and methods and the acknowledgement section. The results of this study have been included in extended format in a series of interim and final national report, coordinated by AGENAS, which has been circulated among all participants, including relevant patient and public communities, as fully documented in the acknowledgement section. The data that support the findings of this study are available from AGENAS upon reasonable request. https://orcid.org/0000-0002-7524-227X Crossing the Quality Chasm: A New Health System for the 21st Century Through the patient's eyes: understanding and promoting patient-centred care A conceptual framework and review of the empirical literature Types of centredness in health care: themes and concepts What 'Patient-Centered' should mean: confessions of an extremist A dimensional analysis of patient-centered care Why the nation needs a policy push on patient-centered health care Patient empowerment, patient participation and patientcenteredness in hospital care: a concept analysis based on a literature review An integrative model of patient-centeredness -A systematic review and concept analysis Helping measure person-centred care. A review of evidence about commonly used approaches and tools used to help measure person-centred care International Alliance of Patients' Organization. Patient-Centred Healthcare Indicators Review: London: IAPO Is patient-centredness in European hospitals related to existing quality improvement strategies? Analysis of a cross-sectional survey (MARQuIS Study). Qual Saf Health Care Investigating organizational quality improvement systems, patient empowerment, organizational culture, professional involvement and the quality of care in European hospitals: the 'Deepening our Understanding of Quality Improvement in Europe (DUQuE)' project. BMC Australian Commission on Safety and Quality in Health Care. Patient-centred care: Improving quality and safety through partnerships with patients and consumers. Sydney: ACSQHC Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation Co-Design for implementing patient participation in hospital services: a discussion paper Patient engagement in hospital health service planning and improvement: a scoping review How is patient involvement measured in patient centeredness scales for health professionals? A systematic review of their measurement properties and content WHO global strategy on people-centred and integrated health services Strengthening integrated people-centred health services. Resolution n.24 at the Sixty Ninth World Health Assembly Geneva Towards actionable international comparisons of health system performance: expert revision of the OECD framework and quality indicators The next generation of health reforms Intesa tra il Governo, le Regioni e le Province autonome sul documento recante Disciplinare per la revisione della normativa dell'accreditamento, in attuazione dell'articolo 7, comma 1, del nuovo Patto per la salute per gli anni Reviews of Health Care Quality Person-centred care in Europe: a cross-country comparison of health system performance, strategies and structures Achieving Person-Centred Health Systems: Evidence, Strategies and Challenges. European Observatory on Health Systems and Policies Cambridge Il monitoraggio da parte dei cittadini della qualità dell'assistenza ospedaliera Empowerment evaluation principles in practice Direzione generale della digitalizzazione, del sistema informativo sanitario e della statistica -Ufficio di Statistica An analysis of variance test for normality (complete samples) A simple test for Heteroskedasticity and random coefficient variation An in depth assessment of diabetes related lower extremity amputation rates 2000-2013 delivered by twenty one countries for the data collection 2015 of the Organization for Economic Cooperation and Development (OECD) A language and environment for statistical computing Prodotto interno lordo lato produzione, Open Data I.Stat Linear regression and the normality assumption Validation of the Health Care Communication Questionnaire (HCCQ) to measure outpatients' experience of communication with hospital staff Validation of a Turkish translation of the Communication Skills Attitude Scale with Turkish medical students Psychometric properties and confirmatory factor analysis of the Jefferson Scale of Physician Empathy Validity and reliability of the Japanese version of the CARE Measure in a general medicine outpatient setting Parents' perceptions of continuity of care in the neonatal intensive care unit: pilot testing an instrument and implications for the nurse-parent relationship Validation of a generic measure of continuity of care: when patients encounter several clinicians Continuity of care: validation of a self-report measure to assess client perceptions of mental health service delivery Validation of the German version of the Patient Activation Measure 13 (PAM13-D) in an international multicentre study of primary care patients Caring for Quality in Health: Lessons Learnt from 15 Reviews of Health Care Quality, OECD Reviews of Health Care Quality Engaging patients in healthcare Volume and health outcomes: evidence from systematic reviews and from evaluation of Italian hospital data The effect of hospital size and teaching status on patient experiences with hospital care: a multilevel analysis Patient satisfaction variance prediction Impact of hospital characteristics on patients' experience of hospital care: Evidence from 14 states Does hospital size affect patient satisfaction? Qual Management Health Care Covid-19: preparedness, decentralisation, and the hunt for patient zero. Lessons from the Italian outbreak Did a fractured let Lombardy down? Politico 23/4/2020 Consistency of safety monitoring using routine national databases: results using a quality of care interpretative model Patient safety monitoring in acute care in a decentralised national healthcare system: conceptual framework and initial set of actionable indicators Focus Emergenza COVID-19 Covid-19 care before, during, and beyond the hospital A National Program to assess and improve healthcare humanization in hospital through a partnership between citizens and healthcare professionals A National Program to improve person centeredness in hospital through a partnership with citizens Essential levels of health information in Europe: an action plan for a coherent and sustainable infrastructure A novel methodology to assess privacy, data governance and ethics in health information systems: Privacy and Ethics Impact and Performance Assessment in the EU Bridge-Health Project Performance measurement in response to the Tallinn Charter: experiences from the decentralized Italian framework A nationwide participatory programme to measure person-centred hospital care in Italy: Results and implications for continuous improvement Acknowledgement section has been added.] The authors declare that they have no conflict of interest in relation to the production of the submitted paper. All authors provided a substantial contribution to the development and implementation of the method as well as the production of the manuscript. FlC, SC, GD, BL, AL, MC and GC designed the survey