Patient-centered Care Research Articles

Personalised care for hyperlipidaemia by tailoring shared decision-making toward patient priorities & needs: results from a patient-led study

Abstract Background The European cardiovascular disease community is actively promoting a shift towards delivering more personalized cardiovascular care. This shift requires a reassessment of current clinical approaches, including approaches to shared decision-making. To be effective, shared decision-making should be grounded in factors impacting treatment adherence and oriented toward patient-relevant outcomes. (1)(2) Purpose To learn from people with hyperlipidemia about their experiences, priorities and needs inside and outside the health system, including pathways and barriers to diagnosis, treatment and adherence. These insights can guide healthcare providers (HCPs) in delivering personalised, patient-centred care. Methods A global Steering Committee of patient advocates, cardiology researchers and HCPs guided study design and interpretation. Forty-six individuals with confirmed high cholesterol (51% female) in Brazil, Australia and the US participated in 60-minute interviews. Half of participants were required to have a prior hospitalization for an ASCVD event. Transcripts were analyzed using a team-based approach. Results Participants are described in Picture 1. Across countries, participants described how HCPs can work with patients to personalize care through realistic, individualized care plans. First, HCPs can make patients more comfortable by using plain language (e.g., heart problems not cardiovascular events) and clearly explain the life-threatening dangers of unmanaged LDL-C, a prerequisite for patients to take high cholesterol management seriously. Once the risks are clear, HCPs and patients can co-develop care plans based on attainable, measurable goals. Topics that should be discussed include individual circumstances that may impact care plan adherence, such as competing priorities (e.g., work travel or family obligations), support system, and finances. Other topics include the range of treatments and lifestyle changes, including how these work in tandem. When discussing treatment options, HCPs can address treatment attributes desirable to patients, including convenience, treatment benefits, safety profiles and costs. Convenience attributes reflect participant desires for therapies that come in a form they are comfortable administering (e.g., tablet, injection) combined with a desire to minimize administration frequency. Meaningful treatment benefits include improving laboratory values, avoiding heart-related events and living longer to spend more time with family. Conclusions: This study identified topics patients would like their HCP to include in shared decision-making. It can inform HCP efforts to deliver personalised cardiovascular care. Structural barriers to effective shared decision-making exist in many health systems, including the time HCPs have allotted to appointments, administrative burden and access. Patient advocacy organisations and HCP organisations can partner to drive policy changes to overcome these barriers.Study ParticipantsIllustrative Quotes

Using PPI and UDL principles to design a gastrointestinal endoscopy patient information video series

Abstract Introduction Patients undergoing GI endoscopy often experience anxiety and due to limited health literacy. Traditional paper-based information leaflets are often not sufficient to accommodate for the diverse way in which people consume information. Public and patient involvement (PPI) and universal design for learning are two well-described pedagogical principles. We wanted to use these principles to design more effective patient education materials. Objectives Given the heterogeneity of resources available to patients, the authors wanted to develop a high-quality and trustable video resources for patients that would be available on our hospital website. These videos would be co-designed by patients and ancillary staff, through the formation of a key stakeholder panel. Results Using PPI principles, we were able to improve the relevance and quality of our content, through the use of storyboards and the expertise of the stakeholder panel. Through the three key UDL principles of multiple means of representation, engagement and action and expression, we were able to ensure that our videos were accessible and appropriate for all of our patients. Initial feedback from stakeholders and patients provided valuable insights, prompting necessary adjustments for accuracy and patient understanding. This comprehensive approach underscores the commitment to enhancing healthcare delivery. Our project is the first guide in combining both pedagogical principles in the development of patient information and education materials. Conclusions The meticulous steps taken, from stakeholder engagement to video production, reflect a commitment to inclusivity and patient-centred care. Ongoing evaluation and feedback mechanisms ensure continuous improvement, contributing to the overall success and sustainability of the digital service. Key messages • This is the first research/patient education piece designed using both PPI and UDL principles. • The importance of patient-centred educational design is key to improving health literacy and education in our patients.

Towards integration of care in Portugal: Expansion of a new management model for the NHS

Abstract Introduction In 1999, the first Local Health Unit (LHU) was created in the Northern region of Portugal to improve management, share resources and integrate care. The LHU integrated a National Health Service (NHS) hospital and primary healthcare (PHC) services located within the same geographic area and became responsible for public health activities and the provision of care. Over the next few years, 7 LHUs were created, the last one in 2012. In 2024, the government expanded this model to the entire territory, creating 39 LHUs. This research analyses the objectives, characteristics and expected outcomes of the scale-up of LHUs. Methods This study utilised a mixed methods approach based on the 6 Ps - Problem, People (policy stakeholders), Process (policy development), Price tag (Resource allocation), Paper (policies, laws, regulations), Programmes (policy implementation); and the political, social and economic setting of the Policy Circle Framework. Findings A 2015 assessment revealed that LHUs did not differ from non-LHUs in terms of access, waiting times, clinical excellency, patient safety or patient centeredness. The degree of integration of care in LHUs seemed lower compared with non-LHUs. However, there was no systematic evaluation of the creation of the first LHU. Despite this, the government announced the intention to expand LHUs to the entire national territory, which culminated with the creation of 39 LHUs in 2024 to deliver integrated care, with an emphasis on the proximity and continuity of health services and promotion. Conclusions Despite the existing knowledge gap on the impacts of LHUs in health outcomes and management efficiency, LHUs can provide opportunities to advance integrated and patient-centred care and develop strategies for managing scarce resources, including the health workforce. Nevertheless, the integration of hospitals and PHC can threaten the centrality of primary health care both in terms of delivery of care and resource allocation.

Tailored Approaches and Patient-centered Care: The Current Landscape of Neoadjuvant Therapy in Rectal Cancer

Colorectal cancer (CRC) is the third most diagnosed cancer in Canada and worldwide. Although mortality rates have declined, it remains the second most lethal malignancy worldwide. For patients with locally advanced rectal cancer (LARC), several new concepts have been introduced in recent years for treatment sequencing and de-escalation. The use of pelvic magnetic resonance imaging (MRI) for initial staging and neoadjuvant therapy response assessment has become a key part of the workup for LARC, utilizing the expertise of specialist radiologists. High-volume rectal cancer centers have adopted total neoadjuvant therapy (TNT) as a preferred approach for many patients with LARC. There is rising interest in shortening the duration of chemotherapy or radiation, or even omitting radiation altogether for select patients, to reduce the burden of long-term toxicities. For patients who achieve clinical complete or near-complete responses (cCR or nCR) to neoadjuvant therapies, nonoperative management (NOM) has emerged as an option to avoid the complications of a total mesorectal excision (TME). This paradigm shift has resulted in numerous treatment options for many patients with rectal cancer, enabling a more individualized, multidisciplinary approach to care. Clinicians must understand how to interpret the evidence around these new concepts to successfully implement them into clinical practice. This review summarizes the recent evidence for neoadjuvant therapy approaches in rectal cancer to provide a context for this paradigm shift to a tailored therapeutic strategy.

The importance of healthcare monitoring systems

Abstract Issue Healthcare evaluation is an important tool of governance in the health sector that reinforces its key components: evidence-based care, effectiveness, programme standards, performance monitoring, quality improvement, risk and incident management and patient-centered care. One of the evaluation systems used by the Veneto Region (north italian region of about 4.8 million inhabitants) consists of the National Outcomes Programme (PNE) developed by the Italian National Agency for Regional Healthcare Services (AGENAS) on behalf of the Health Ministry. Description The PNE is an instrument used to measure, analyze, evaluate and monitor clinical and welfare assistance performances of Italian healthcare facilities. The Veneto Region, in particular, utilizes a regional epidemiologic service to periodically monitor 21 performance indicators based on “treemap” methodology. These indicators are used to assess processes, outcomes and volumes. The data used to monitor these practices derive from the hospital discharge documentation (SDO) and tax registry information system. The aim of this monitoring system is to track any critical situation that is not in alignment with national guidelines and to improve the efficacy, efficiency, appropriateness and safety within the healthcare system. Results In the Veneto region, over the course of nearly 10 years, this method of management has led to the development of various training courses that guide clinicians to correctly document and code different diagnosis and treatments. The treemap process of analysis has also made possible various clinical audits that have provided significant policy changes regarding risk and overall health management. Lessons Having a constant view of healthcare performance has proven to be helpful not only to identify some common gaps in care given from different facilities on a national level, but also guides different regions to develop specific strategies that lead to quality improvement. Key messages • Data on healthcare quality can be used as comparative information and for quality improvement. • Continuous monitoring of specific performance indicators can help identify difficulties in healthcare facilities and create strategies for long term solutions.

Exploring methodologies and frameworks for best practice transfer at the primary care level

Abstract Background In Feb 2023, the EU’s Joint Action on the transfer of best praCtices In pRimary CarE (CIRCE-JA) was launched with the objective of effectively transferring and implementing six best practices (BPs) among Member States (MS). Transferability from one primary care (PC) setting to another can be challenging given organizational, legal, cultural, social, economic, and environmental factors, requiring robust a methodological framework to guide the transfer process. A scoping review was conducted to identify conceptual models and methodological frameworks for context-relevant and evidence-informed BP transfer in PC settings. Methods The study aimed to identify models or frameworks to guide BP transfer in PC settings, whilst maximizing transferability. The JBI methodology was used, and an extensive search was conducted in PubMed (time limit: Jan ‘13-May ‘23). All publications of original research, systematic reviews, and text and opinion papers in English were eligible for inclusion. Key exclusion criteria were set, i.e., intervention type, level of care and reporting quality. The search was supplemented by gray literature review. Results From a total of 369 publications, 9 met eligibility criteria, reporting on 10 conceptual and methodological models/framework largely varying. These included transfer models applicable to all BPs as well as elements specific to some BPs, i.e., addressing integration, patient-centered care, care coordination, and health promotion. Strengths and weaknesses were identified for all. Conclusions Transferability of health interventions is complex, requiring systematic consideration of setting and intervention characteristics to inform and support local adaptation, implementation, and decision-making. Key elements identified can support the CIRCE-JA BP transfer and are largely relevant for further BP transfer across PC settings in EU MS, incl. for local adaptation, stakeholder engagement and effective implementation monitoring. Key messages • Innovative BPs are successfully deployed in many EU MS. To best support transformation for strong EU primary care and resilient health systems, it is important to ensure evidence-informed BP transfer. • This review reports on the selection of appropriate frameworks and models, and key elements thereof, to allow successful transfer of CIRCE-JA BPs and other BP transfer across PC settings in Europe.

Development of a novel Patient-Reported Outcome Measure (PROM) for adults with an Inherited Cardiac Condition (ICC)

Abstract Background Research on the quality-of-life (QoL) among patients with inherited cardiac conditions (ICC) is limited. Existing evidence from a systematic review indicates that most studies rely on generic measures of health-related QoL, which may not adequately capture ICC-specific factors. The current study aims to develop a disease-specific patient-reported outcome measure to address this gap. Methods Using a qualitative study design, we first conducted focus groups until data saturation was achieved (n=15). Additionally, an expert panel of healthcare professionals was interviewed to ascertain their perspectives on patient-centered care and to evaluate face validity. Transcripts of all focus groups and interviews were analyzed thematically using Atlas.ti, qualitative analysis software, to identify concepts and formulate survey items for the initial instrument. We used the ‘Centre for Health Promotion’ QoL model, consisting of three domains- Being, Belonging, and Becoming- as the theoretical framework for our analysis. Results Our analysis revealed alignment with specific QoL domains of the overarching framework and identified a gap in genetic-specific domains. A novel overarching theme, genetic well-being, was identified, encompassing specific constructs related to future uncertainty, reproductive concerns, and the anticipation of disease development, thus enriching the conceptualization of QoL in the context of inherited cardiac conditions. The discussion will include an exploration of the face validity of the draft instrument. Conclusion Patients diagnosed with an inherited cardiac condition (ICC) face a spectrum of challenges originating from both disease-related stressors and hereditary factors alike. Recognizing that relying solely on objective clinical assessment may fail to capture the full impact of the disease, there has been an increasing focus on incorporating patient-reported measures into disease evaluation. This qualitative study contributes to developing a comprehensive patient-reported outcome measure tailored to individuals with ICC.PROM development study

KardioNet Digital - a structured care model involving digital tools for intersectoral communication and a patient-focused strategy for treatment of heart failure

Abstract Introduction Inefficiencies and discontinuities in care at the interfaces within Germany's healthcare system, especially between acute and outpatient care, present significant challenges in managing patients with heart failure (HF). The management complexity of HF has increased with the advent of new digital tools, though patient acceptance of these tools remains contentious. The prevention of loss of diagnostic and therapeutic information for this complex disease is crucial for cross-sectoral communication (hospital - office-based cardiologist - general practitioner) and quality of care. Purpose Our goal was to examine the impact of digital app-supported coordination of HF management across different healthcare providers from hospital discharge to the ambulatory sector and to assess patients' acceptance of a structured care program. A patient-focused digital strategy, supported by a Heart Failure Nurse (HFN), aimed to facilitate structured follow-up and patient empowerment, focusing on patient-reported outcomes and experiences (refer to Table 1). Results Out of 401 patients screened during their hospital stay for HF, only 57 (14.9% male, 12.6% female) participated in the KardioNet Digital (KND) program. NYHA classifications were I (3.5%), II (49.1%), III (40.4%), and IV (7.1%); Diagnoses included CMP (26, 45.6%), CAD (19, 33.3%), valvular HF (8, 14.0%), and others (4, 7.0%). The mean age was 55.03 years, with a notable difference in participation based on age (≥70 years: 9.5% male, 33.3% female; <70 years: 90.5% male, 66.7% female). Age was a significant determinant of program participation. Patients who regularly used the app benefited from several features: A total of 35 alerts (17 patients) were triggered for reasons such as bodyweight increase (2kg or more) and device-induced alerts (i.e. false shock delivery, 3x slow-VT, Syncope), leading the HFN to contact the patients. This early intervention prevented rehospitalization due to decompensation of heart failure in 11 patients (64.7%) and addressed device-related alarms for organizing an emergency hospital visit by HFN. Despite substantial incentives, such as support from an HFN and expedited appointments with specialists for follow-up therapy, refusal rates were high (refer to Table 2). Conclusion A structured, digitally supported cross-sectoral care model for heart failure patients can potentially improve care coordination and outcomes. However, the success of such programs critically depends on patient willingness and the seamless integration into existing healthcare structures. Despite valuable incentives, we observed low acceptance of the program. Even among motivated participants (14.1%), there is a significant need for substantial support and education on digital literacy for the widespread implementation of digital tools in real-world settings for the treatment of heart failure.Workflow of structured digital supportReasons for Declining Participation

Improving breast cancer care post-pandemic from the patient perspective

Abstract Background Since the onset of the pandemic, breast cancer (BC) services have been disrupted in most countries. The purpose of this qualitative study is to explore the unmet needs, patient-priorities, and recommendations for improving BC healthcare post-pandemic for women with BC and to understand how they may vary based on socio-economic status (SES). Methods 37 women were invited to take part in follow-up semi-structured qualitative interviews in early 2023. The interviews explored their perspectives of BC care since the easing of COVID-19 government restrictions, including unmet needs, patient-priorities, and recommendations specific to BC care. Thematic analysis was conducted to synthesize each topic narratively with corresponding sub-themes. Additionally, variation by SES was analysed within each sub-theme. Results Of the 28 women who participated in interviews, 39% were categorized as high-SES, while 61% were categorized as low-SES. Women expressed unmet needs in their BC care including routine care and mental and physical well-being care, as well as a lack of financial support to access BC care. Patient-priorities included: developing cohesion between different aspects of BC care; communication with and between healthcare professionals; and patient empowerment within BC care. Recommendations moving forward post-pandemic included: improving the transition from active to post-treatment; enhancing support resources; and implementing telemedicine where appropriate. Overall, women of low-SES experienced more severe unmet needs, which resulted in varied patient-priorities and recommendations. Conclusions As health systems are recovering from the COVID-19 pandemic, the emphasis should be on restoring access to BC care and improving the quality of BC care, with a particular consideration given to those women from low-SES, to reduce health inequalities post-pandemic. Key messages • The pandemic has impacted BC services considerably and this study has identified a range of unmet needs, patient-centered priorities, and recommendations. • Particular consideration needs to be given to those women from lower socioeconomic groups, in order to reduce health inequalities, which have been further exacerbated by the pandemic.

Establishing normal global longitudinal strain values in heart transplant patients: a novel approach to enhancing detection of rejection and cardiac allograft vasculopathy

Abstract In the realm of heart transplantation, accurate cardiac monitoring is pivotal for patient outcomes. This study pioneers in filling a critical void by delineating the normative values of Global Longitudinal Strain (GLS), specifically tailored for heart transplant recipients, distinguishing them from the general population. We conducted a retrospective analysis on a cohort of 110 patients who underwent heart transplantation, meticulously compiling echocardiographic data over the first 18 months post-operation. Our research focused on two primary indicators of cardiac function: Ejection Fraction (EF) and Global Longitudinal Strain (GLS). The data indicated that EF values remained within the normal range and relatively stable throughout the monitoring period. In contrast, GLS values exhibited a gradual increase over time, suggesting a post-transplant myocardial adaptation process. However, these GLS values did not reach the established reference ranges for non-transplanted, healthy hearts, highlighting the distinctive physiological landscape of transplant recipients. Our study elucidates the superior sensitivity of GLS in detecting subtle myocardial changes that might precede clinically apparent dysfunction, advocating its utility as a crucial surveillance tool for this demographic. By pinpointing the modified GLS benchmarks applicable to post-heart transplant patients, our findings advocate for a recalibrated echocardiographic assessment protocol. Such a protocol can significantly enhance the surveillance for post-transplant complications, most notably graft rejection and the onset of cardiac allograft vasculopathy (CAV). The study posits that incorporating these refined GLS thresholds into routine post-transplant evaluations could facilitate early intervention, potentially mitigating adverse outcomes and improving the long-term prognosis for heart transplant recipients. Thus, our research underscores the need for updated clinical guidelines that integrate these novel echocardiographic insights, paving the way for improved patient-centric cardiac care in the transplant setting.

TB Care in Ukraine: Understanding Access Barriers at the Primary Healthcare Level

Abstract Background In the WHO European Region, Ukraine is a high-priority country for TB control, being one of nine globally with high rates of multidrug-resistant TB. The WHO emphasizes patient-centered TB care, prioritizing patients as key figures in the care continuum. Thus, our aim was to explore barriers impacting the accessibility of TB services for patients at the primary healthcare level (PHC) in Ukraine. Methods During December 2022-June 2023, a qualitative study was conducted across eight PHC facilities in the Kyiv, Odesa, Mykolayiv, and Volyn regions. The study comprised: 4 focus groups involving 27 family doctors, 16 in-depth interviews with managers and health authorities from regional and national levels, as well as 25 interviews with TB patients. All data was transcribed, manually coded and deductively analyzed. Results All participants highlighted the benefits for patients of providing TB care continuum at the PHC level, yet the program lacks clear requirements for training of family doctors and nurses. Overall family doctors perceived positively various TB training they received; but despite this, they expressed doubts and reported a lack of practical skills, affecting the quality of care provided. Patients highlighted several barriers in interacting with healthcare providers, including stigma and cases of dismissive behavior of healthcare workers, communication challenges, and breaches of patientś data confidentiality. Patients also mentioned self-stigma, and perceptions of family doctors as poorly trained in TB. Still, patients who received healthcare services from the same family doctor “during long time” positively described their experience with TB services too. Conclusions Establishing robust patient-provider interaction at the PHC level can help overcome persistent barriers to TB care continuum in Ukraine. To achieve this, a comprehensive TB training program tailored for PHC family doctors and nurses should be developed and implemented. Key messages • Expanding TB healthcare services to primary healthcare levels in Ukraine can be beneficial for patients. Training primary healthcare staff can enhance TB care quality. • Establishing robust patient-provider interaction at the PHC level can help overcome persistent barriers to TB care continuum in Ukraine.

Collection and use of patient-reported experience measures: approach to improve health care

Abstract Background Patient experience is one of the fundamental determinants of healthcare quality. There is progress in the collection of PREM in national level for hospitalized patients since 2020 in Latvia. Aim Analyze (2020.-2022.) in-patients Top-box rates about communication, share-decision making, patient safety and Net Promoter Score (NPS). Methods Project starting point was 2019. Agreement with EC, Sant’Anna School, Ministry of Health and Centre for Disease Prevention and Control of Latvia. Since 2020, the collection of PREM has been taking place regularly in hospitals (around 40% from all hospitals) and on average 20% response rate of those who agreed to participate in the survey. PREM questionnaire according to HCAHPS (Consumer Assessment of Healthcare Providers and Systems) standards, including Picker Institute patient experience questions. In line with OECD (Organization for Economic Co-operation and Development) recommendations, patient safety issues are also included. Top-box rates (most positive response) and percentiles (25th - 75th) were calculated. Results Totally 17019 adult (18 years and more) patient responses were analyzed with response rate 20.3% (n = 83983). 74.6% (67.5-78.2) during hospital stay doctors always explain things in a way you could understand and sufficiently involved in the decision-making process of treatment - 75.0% (70.1-81.4). During hospital stay 4.1% (n = 601) experienced patient safety incidents which were patient-reported. The most common groups were wrong patients, medication errors, incl. adverse drug reactions and falls. Hospitals achieved a NPS of 61 for 3 year period (2020.-2022.). Conclusions Collecting information about the patient experience may be the starting point for engaging patients and moving to more patient-centered health care. The results of these in-patient PREM data can be used to identify areas of improvement and make changes to better meet the needs and expectations of their patients. Key messages • It is a good practice for the implementation of new health care quality data - patient experience reported measures at the national level. • Feedback about the patient experience on regular basis provides insight into patient needs, preferences and values, which can help to improve the quality and safety of care.

Review of national rare disease strategies: innovation driving change

Abstract Background A rare disease affects fewer than 5 in 10,000 people. More than 6,000 known rare diseases affect up to 6% of the European population. A national rare disease strategy sets out a country’s plan to reduce disease burden and improve quality of care for people with rare diseases. This review, requested by the Department of Health in Ireland to inform a new national strategy, described national rare disease strategies in 13 selected countries. Methods Strategies published from 2013 to 2023 were identified via online searches for Austria, Australia, Denmark, England, Finland, France, Germany, Ireland, the Netherlands, Northern Ireland, Portugal, Scotland and Wales. National representatives were contacted to confirm the identified resources. Data were extracted for the domains of: aims, priorities, implementation, governance and funding models. Descriptive analysis and narrative synthesis was undertaken. Results Improving treatment and coordination of care was a common overall aim. Priorities noted in all strategies were: screening and diagnosis; access to healthcare and coordination of services; rare disease research; and patient representation and empowerment. Implementation details varied to reflect the national context and time of strategy development. More recently-developed strategies included more precise actions and greater emphasis on innovations in genomics than older strategies. Strategies were developed, implemented, monitored and evaluated via combinations of newly-established bodies and or existing health authorities. Six countries did not specify a funding model or dedicated budget for strategy implementation. Conclusions National rare disease strategy contents and implementation approaches varied between countries and reflected innovations over time. This review will inform the development of Ireland’s new national rare disease strategy. Key messages • This review provided insights into national rare disease strategies over a 10-year period. • The findings will inform strategy development in Ireland, and are relevant to other countries.

Sex-specific clinical outcomes and healthcare resource utilization in the 5 years following hospitalization for heart failure

Abstract Background Heart failure (HF) a leading cause of hospitalization, and sex differences in care have been described. Purpose We assessed sex-specific clinical outcomes and healthcare resource utilization following hospitalization for HF. Methods This was an exploratory analysis of patients hospitalized for HF across 10 Canadian hospitals enrolled in the Patient-Centred Care Transitions in HF pragmatic cluster-randomized trial. Primary outcome was all-cause mortality. Secondary outcomes included all-cause readmissions, HF readmissions, emergency department (ED) visits, and healthcare resource utilization. Outcomes were obtained via linkages with administrative datasets. Results The 4441 patients (50.7% female) had high event rates. At 5 years of follow-up, 63.6% male and 65.5% of male and female patients, respectively, had died (p=0.19); 85.4% and 84.4% of male and female patients, respectively, were readmitted with no sex differences in mean [SD] all-cause readmissions (males, 2.8 [7.8] and females, 3.0 [8.4], p=0.54) or HF readmissions (males, 0.9 [3.6] and females, 0.9 [4.5], p=0.80) per person. The mean (SD) annual total healthcare costs per patient was $80334 (116762) for males and $81010 (112625) for females, with no sex difference (p=0.90); however, there were sex differences in cost breakdown: males incurred greater costs from specialist, hemodialysis, and day surgical care, and females incurred greater costs from home visits and long-term care. Conclusions Males and females were at similarly high risk of mortality and readmissions, and had similar total healthcare costs following hospitalized for HF. Notwithstanding similar risks, males received relatively more specialist and invasive care, and females received relatively more supportive care.

4.D. Scientific session: From policy to implementation: Learnings around health system reforms and Universal Health Coverage

Abstract In this session, the authors and audience have the opportunity to engage in discussions around health policy integrity and reform implementation. Introducing and implementing health system reform has been a perennial issue for countries around the world over the past number of decades. Recently, the introduction and implementation of Universal Health Coverage (UHC) has been of particular focus, with 193 countries committed to introducing UHC by 2030. At the same time, European countries that previously established national health systems are introducing new reforms in the hope of making their health systems more efficient and equitable. However, there are a number of challenges along the path of policy development and implementation with which all countries must grapple, and how individual countries go about reforming their health systems depends on their social, political, cultural and economic contexts. Learnings from around the world have highlighted that reforms can be challenged or stalled in both the design and implementation phases. This workshop, which conceptualises implementation as the “acid test” of a policy, thus explores, through three case studies, the factors that facilitate or challenge the implementation of reforms. At the same time, we discuss policy integrity, exploring reasons for why policies pivot away from original design and intent. Furthermore, we discuss the implications of health reform on equity, cognisant that the primary objective of this collective reform work is to reduce the financial burden of healthcare on households and improve access. The first presentation will provide the framework for audience discussions, outlining international lessons in relation to UHC reforms and equity. The second presentation will provide a snapshot of the Finnish experience of introducing a “big bang” structural reform. The third presentation highlights lessons from the Portuguese experience of primary healthcare reforms, the opportunity these offer for creating patient-centred care and the integral role that politics and governance play in the reform process. Finally, the Irish case study highlights the experiences of a High Income County attempting to introduce UHC much later than its European counterparts, and negotiations between the public and private sectors. Through this, we hope to hold the tensions and stimulate debate about policy robustness and resilience, and reform implementation. Each presenter will be given a strict deadline of 10 minutes each by the chair and then the audience will be invited to debate the problems identified and strategies proposed to discuss: (i) what are the facilitators and barriers to reform implementation, (ii) what are the factors that encourage policy integrity and change and (iii) whether greater cooperation across Europe regarding health reforms can be more effective in supporting robust health systems. Key messages • For reforms to be facilitated, there must be cohesion and commitment across the political, social, economic and cultural systems, and no fragmentation across health system functions. • As policy implementation is attempted, there is a tension between remaining true to key values and adapting to new circumstances.

Understanding the benefits of renin-angiotensin-aldosterone system inhibitors and influence of hyperkalaemia on their prescription: a UK survey of healthcare professionals' views and practice

Abstract Background Renin–angiotensin–aldosterone system inhibitors (RAASi) improve outcomes in heart failure with reduced ejection fraction (HFrEF) and they should be increased to the maximally tolerated dose. However, their use is often hindered by hyperkalaemia leading to discontinuation or down titration. Purpose Assess perceptions of primary and secondary healthcare professionals regarding benefits of RAASi according to indication and, in the context of developing hyperkalaemia, to identify barriers to optimal utilisation, and to explore options for improving management protocols, specifically in HFrEF. Methods An electronic survey was distributed in primary and secondary care setting in Hampshire, UK, to evaluate knowledge about benefits of RAASi, clinical response to varying level of potassium (K+), and decision-making using several clinical scenarios. Hyperkalaemia was graded into mild (serum K+ 5.5 – 5.9 mmol/L), moderate (serum K+ 6.0 – 6.4 mmol/L) or severe (serum K+ ≥ 6.5 mmol/L). Results Between November 2021 and January 2023, 300 questionnaires were completed by 274 (91%) physicians (varying grades of seniority), 22 (7%) non-medical prescribers, and 4 (1%) pharmacists. 80% were working in secondary care across different specialities (31 working in cardiology and 15 in nephrology). The majority were aware of prognostic benefit of angiotensin converting enzyme inhibitors (ACEi) in patients with HFrEF although this was lower for mineralocorticoid receptor antagonists (MRA) (Fig 1). Fewer than 2/3 of respondents were aware of impact of ACEi on symptoms. In the presence of mild hyperkalaemia, 75% and 88% of healthcare professionals would stop or reduce ACEi and MRA, respectively. In moderate or severe hyperkalaemia, this increased to 96% and 97%, respectively (Fig 2A-B). When considering the scenario of a patient with HFrEF who had ACEi stopped due to K+ 5.9 mmol/L, the potassium at which the responder would consider re-starting the ACEi ranged from 77% when potassium level < 5.5 mmol/L to 1% in moderate or severe hyperkalaemia (Fig 2C). 74% of healthcare professionals were familiar with local hyperkalaemia management protocol and 93% supported dedicated training on RAASi dose adjustment and hyperkalaemia management. Conclusion This survey, across a broad range of healthcare professionals, shows uncertainties around knowledge of benefits of RAASi in patients with HFrEF and there is sizeable variation in the prescribing response to degrees of hyperkalaemia. Given the voluntary nature of the survey, it is plausible that these data are biased towards individuals with greater understanding. Regardless, there is a need for continued education with a goal of improving patient-centred care.

The Evolution of Health Information Technology for Enhanced Patient-Centric Care in the United States: Data-Driven Descriptive Study.

Health information technology (health IT) has revolutionized health care in the United States through interoperable clinical care data exchange, e-prescribing, electronic public health reporting, and electronic patient access to health information. This study aims to examine progress in health IT adoption and its alignment with the Office of the Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT (ASTP's) mission to enhance health care through data access and exchange. This study leverages data on end users of health IT to capture trends in engagement in interoperable clinical care data exchange (ability to find, send, receive, and integrate information from outside organizations), e-prescribing, electronic public health reporting, and capabilities to enable patient access to electronic health information. Data were primarily sourced from the American Hospital Association Annual Survey IT Supplement (2008 to 2023), Surescripts e-prescribing use data (2008 to 2023), the National Cancer Institute's Health Information National Trends Survey (2014 to 2022), and the National Center for Health Statistics' National Electronic Health Records Survey (2009 to 2023). Since 2009, there has been a 10-fold increase in electronic health record (EHR) use among hospitals and a 5-fold increase among physicians. This enabled the interoperable exchange of electronic health information, e- prescribing, electronic public health data exchange, and the means for patients and their caregivers to access crucial personal health information digitally. As of 2023, 70% of hospitals are interoperable, with many providers integrated within EHR systems. Nearly all pharmacies and 92% of prescribers possess e-prescribing capabilities, an 85%-point increase since 2008. In 2013, 40% of hospitals and one-third of physicians allowed patients to view their online medical records. Patient access has improved, with 97% of hospitals and 65% of physicians possessing EHRs that enable patients to access their online medical records. As of 2022, three-fourths of individuals report being offered access to patient portals, and over half (57%) report engaging with their health information through their patient portal. Electronic public health reporting has also seen an increase, with most hospitals and physicians actively engaged in key reporting types. Federal incentives have contributed to the widespread adoption of EHRs and broad digitization in health care, while efforts to promote interoperability have encouraged collaboration across health care entities. As a result, interoperable clinical care data exchange, e-prescribing, electronic public health reporting, and patient access to health information have grown substantially over the past quarter century and have been shown to improve health care outcomes. However, interoperability hurdles, usability issues, data security concerns, and inequitable patient access persist. Addressing these issues will require collaborative efforts among stakeholders to promote data standardization, implement governance structures, and establish robust health information exchange networks.

Effect on comprehension of an AI patient-friendly hospital discharge letter: a quasi-RCT

Abstract Background During transition from hospital to home care, discharge letters serve as a bridge of information between hospital physicians, general practitioners, and patients. However, the complexity of these letters often hinders patient comprehension, leading to medication errors and adverse outcomes. We assessed the effect on patients’ comprehension and satisfaction of using AI to transform discharge letters into patient-friendly versions. Methods An online quasi-randomized controlled parallel-group trial was conducted in Italy. A synthetic discharge letter for a chronic obstructive pulmonary disease patient was drafted. GPT-4 rephrased the letter into an easier-to-understand version. Participants were assigned to receive either the original or AI-generated letter and completed comprehension assessments and satisfaction survey. Results Out of 460, 166 participants received the original letter, and 175 the AI version. The AI group showed significantly higher comprehension scores (median 4;IQR 2-4 vs. 2; IQR1-2, p < 0.001) and outperformed the control group in understanding diagnosis, medications, and antibiotic instructions. Perceived satisfaction was higher in the AI group across all measures (p < 0.001). Health literacy was a good predictor of comprehension in both arms (p = 0.013; p = 0.015). Subgroup analysis revealed the AI letter nearly bridged the comprehension gap between non-healthcare individuals and healthcare professionals receiving the original letter. Conclusions AI-optimized discharge letters improved patient understanding, and satisfaction compared to traditional letters. The study underscores the influence of sociodemographic factors like healthcare experience and health literacy on comprehension, advocating for adaptive communication strategies. These findings contribute to discussions about integrating AI in healthcare to develop patient-centered communication approaches. Key messages • AI-generated patient-friendly discharge letters significantly improved comprehension and satisfaction compared to traditional letters. • Integrating AI in healthcare communication can help bridge comprehension gaps and promote patient-centered care.

A Framework for Bariatric Surgery Patient Care: Patient and Professional Perceptions

Abstract Introduction A multidisciplinary health team for perioperative care of the bariatric patient, sustained in a viable framework to support a long-term follow-up service, may decrease rates of complications, help the recognition of the complexity of this chronic disease, and provide a comprehensive bariatric surgery process analysis. This study aimed to analyze patients’ and professionals’ experiences with the perioperative care process and identify their perceptions of the bariatric surgery process to support the long-term management of obesity surgical treatment. Methods This qualitative study was conducted in a bariatric surgery center in south Portugal. Seven health professionals participated in one focus group, and sixteen patients participated in one of the three focus groups. Patients’ focus group script had eleven open main questions with follow-up questions to probe for more information, addressing motivations, experiences with the pre-surgery and post-surgery process, and perceptions of lifestyle changes. Results Participants reported the need for a reference professional in the hospital to contact, the importance of psychological support to help patients deal with the ‘ups and downs’ of post-surgery life, and the financial support for physical activity programs. Conclusions This research helped identify a need for a framework for long-term follow-up and showed priorities to tailor health services for managing bariatric surgery patients. New bariatric surgery programs should incorporate a diverse health team, focusing on patient support in the long-term follow-up. This team should be led by a dedicated case manager and include physical activity specialists. Key messages • The positive effects of bariatric surgery go beyond weight loss, reinforcing the importance of developing a new conceptual framework based on a patient-centered care model. • A case manager specialist on the bariatric surgery process may be the key to improving the long-term benefits of bariatric surgery.

Leveraging digital adherence technologies to enhance public health: insights from TB care in Ukraine

Abstract Background Effective tuberculosis (TB) care is vital for public health, especially in war-affected Ukraine. In response to the complex healthcare delivery landscape, where traditional directly observation treatment methods became impractical, digital adherence technologies (DATs) emerged as a promising solution, offering more autonomy for people, and remote monitoring capabilities for healthcare providers. Intervention The PATH-led USAID-funded Support TB Control Efforts in Ukraine (STBCEU) project implemented smart pill boxes in eleven Ukrainian regions. These devices equipped with built-in reminders helped people adhere to their medication regimen, and signaled healthcare providers when the box was opened. Results Since April 2022, STBCEU has supported 2,022 people with TB who used smart pill boxes during their treatment, including 489 (24%) with drug-resistant TB (DR-TB). A total of 482 people continue utilizing boxes. Of 1,540 people with TB who completed the use of boxes, 1,207 people (78%) successfully completed TB treatment with an average of 84% treatment adherence rate digitally reported by the technology. Conclusions The integration of smart pill boxes in TB management has enhanced people-centered care, ensuring treatment continuity even in challenging circumstances and providing healthcare providers with real-time adherence data. The innovation contributed to TB control efforts and health equity through expanding opportunities for people to choose their treatment model based on their needs, available resources and community support programs. Leveraging digital solutions proved to be essential in strengthening healthcare systems. In the realm of TB management, DATs enhance differentiated care, embodying a harmonious integration of technology automation and provider interventions. Key messages • Integration of smart pill boxes enhanced patient-centered care, providing real-time adherence data and empowering individuals to choose personalized treatment models. • Digital technologies like smart pill boxes transformed TB care, offering tailored support for patients and remote monitoring capabilities for healthcare providers even in challenging circumstances.