When western concept meets eastern culture: Exploring the impact of Confucianism on shared decision-making in China.

This commentary explores how Confucian values influence shared decision-making (SDM) in Chinese healthcare, particularly in oncology. It highlights two key cultural foundations: Family Harmony and Filial Piety, which underscore the deep-rooted involvement of families in medical decision-making, often prioritizing collective decisions over individual autonomy; and Ritual Governance, which explains the cultural roots of power imbalances in healthcare relationships, where patients typically defer to the authority of doctors, and the role of nurses in SDM is limited. The paper argues that for SDM to be effectively integrated into Chinese healthcare, strategies must be adapted to align with cultural norms while encouraging patient empowerment. It also calls for a nuanced understanding of the evolving Chinese culture and emphasizes the need for global healthcare providers to develop cultural competence to better support Chinese patients, especially in the context of oncology, both domestically and internationally.

Exploring Patient Empowerment in Major Depressive Disorder: Correlations of Trust, Active Role in Shared Decision-Making, and Symptomatology in a Sample of Italian Patients.

Background/Objectives: Empowerment in medicine and psychiatry involves patients gaining control over health-related decisions, improving treatment adherence, outcomes, and satisfaction. This concept is especially significant in psychiatric care due to the complex challenges of mental health conditions, including stigma and impairment of emotional and cognitive functioning. We aim to investigate the correlations between patient trust, decision-making involvement, symptom severity, and perceived empowerment among individuals with Major Depression. Methods: Patients with Major Depressive Disorder were recruited in the "Policlinico G. Rodolico" psychiatry outpatient clinic from November 2022 to June 2023. Inclusion criteria: ages 18-65, ability to consent, stable condition, psychiatric medication history, and recent consultation. Exclusion criteria: psychotic features, bipolar disorder, substance abuse, high suicide risk, and severe comorbidities. Measures included the User Scale for Measuring Empowerment in Mental Health Services (SESM), Trust in Oncologist Scale (TiOS), Clinical Decision-Making Style for Patients (CDMS-P), and Hamilton Depression Rating Scale (HAM-D). Analysis used Kendall's Tau correlation and Two-One-Sided Tests procedure. Results: Seventy-three patients completed the study. No relationship was found between decision-making involvement and perceived empowerment (τ = -0.0625; p = 0.448), or between trust in psychiatrists and empowerment (τ = 0.0747; p = 0.364). An inverse correlation existed between patient involvement in therapy management and trust (τ = -0.2505; p = 0.002). Depression severity inversely correlated with empowerment (τ = -0.2762; p = <.001), but not with trust or decision-making involvement. Conclusions: The lack of significant correlations suggests that decision-making involvement and trust alone may not suffice to enhance empowerment. Trust may encourage patient passivity, while skepticism might drive active involvement. Higher empowerment is associated with less depressive symptoms, highlighting its potential connection with patient outcomes.

Patient Initiated Follow-Up (PIFU): how can rheumatology departments start to reap the benefits? A consensus document.

Patient Initiated Follow-Up (PIFU) is gaining momentum in the NHS, aiming to optimize outpatient care amidst rising service demands. PIFU is valuable in rheumatology, where the increasing demand for ongoing management exacerbates the patient backlog. Importantly, PIFU has demonstrated comparable safety and outcomes to traditional care in numerous studies. PIFU empowers patients, drives personalized care, increases efficiency, and has the potential to reduce waiting lists by allowing services to focus on new and acute cases. Effective PIFU implementation includes careful selection of patients, educating patients and healthcare staff, well defined operational guidelines, and robust remote monitoring. Digital solutions can enhance PIFU through patient education, active remote monitoring and streamlined escalation. Electronic Patient Reported Outcome Measures (ePROMs) provide a suitable and safe metric to monitor patients remotely. Given the potential benefits, outpatient departments should consider investing in PIFU as a solution to current healthcare delivery challenges and as a means for future proofing clinical systems against increasing service demands.

Implementation of an electronic patient portal in routine mental health care of hospitals in Germany - evaluation of attitudes of healthcare providers.

BACKGROUND: The use of digital tools such as electronic patient portals in different health care disciplines and settings has been increasing, but the rate of implementation in clinical practice still lags behind expectations. While studies have linked the use of electronic patient portals to positive health outcomes for patients, studies addressing the viewpoints of healthcare providers are rare. METHODS: We performed an online survey of attitudes of healthcare providers towards an electronic patient portal for mental health hospitals. The portal was developed by five communal providers of mental health care in different regions in Germany. The survey was carried out during the early phase of implementation of the portal. RESULTS: Twenty project leaders and 37 clinicians from five different mental health hospitals answered the questionnaire (response rate: 45% and 28%). Overall, acceptance of online applications among respondents was high. The healthcare providers mentioned perceived benefits (e.g. accessibility of new patient groups, use of therapy-free periods) as well as a number of technical, structural, organizational and staffing barriers for successful implementation in hospital settings (e.g. workload of healthcare providers and lack of staff, limited digital competences, unstable WLAN). CONCLUSION: The perceived barriers and facilitators of the implementation of online applications and electronic patient portals in mental health hospitals identified by healthcare providers may be taken into account. Improving commitment of the healthcare providers to implementation and use of digital interventions may help foster digitalisation in mental health hospitals.

Psychological resilience in patients with primary Sjögren's syndrome: effect of involvement of major salivary and lacrimal glands.

The aim of this study was to assess whether the involvement of major salivary and lacrimal glands in primary Sjögren's syndrome (pSS) affected the psychological resilience of patients. This cross-sectional study included 116 patients with pSS. Data were collected through clinical examinations, measurement of salivary flow rates (SFRs), and from Schirmer's test, as well as from patient-reported outcome measures (PROMs), such as the European League Against Rheumatism (EULAR) Sjögren's Syndrome Patient Reported Index (ESSPRI), Brief Resilience Scale (BRS), Work Productivity and Activity Impairment (WPAI), Oral Health Impact Profile-14 (OHIP-14), and the Hospital Anxiety and Depression Scale (HADS). Hyposalivation was defined as an unstimulated SFR of ≤0.1 mL/min. The BRS score (mean ± SD = 2.60 ± 0.69) was lower in patients with recurrent parotitis (2.11 ± 0.37) than in those without recurrent parotitis (2.67 ± 0.86), in the whole group. In patients with an unacceptable symptom state (ESSPRI score ≥ 5 points), a lower BRS score was observed in patients with both hyposalivation and ocular dryness (2.59 ± 0.69) than in patients with isolated hyposalivation (2.84 ± 0.84). The BRS score was also negatively associated with the WPAI-Daily Impairment and OHIP-14 scores in patients with hyposalivation as well as with HADS-A (the seven items of HADS relating to the anxiety dimension) and HADS-D (the seven items of HADS relating to the depression dimension) in the whole group. The results suggest that psychological resilience in pSS may be affected by recurrent parotitis, the levels of anxiety and depression, as well as hyposalivation with ocular dryness.

Barriers and facilitators of healthcare professionals in integrating shared decision-making in pancreatic cancer treatment: A network approach.

PURPOSE: Shared decision-making (SDM) is crucial in pancreatic cancer treatment due to its choice-sensitive nature and limited prognosis. Treatment of pancreatic cancer is organized in a network approach. Several obstacles exist on different levels-patient, healthcare professional, organizational, societal-that impede integration of SDM. This study aims to identify barriers and facilitators to SDM implementation within a comprehensive cancer network. METHODS: A qualitative research design was applied, involving interviews and focus groups on barriers and facilitators with healthcare professionals involved in the implementation of SDM. In one comprehensive cancer network in the Netherlands, including seven hospitals, a project was initiated with the goal of empowering patients and healthcare professionals in SDM throughout primary, secondary and tertiary healthcare settings. A total of 17 participants were assessed. Directed qualitative content analysis was performed by two researchers. RESULTS: Main findings revealed barriers such as time constraints, lack of priority of physicians, little involvement of general practitioners, and insufficient social context of patients in referrals, alongside facilitators including learning communities with practical SDM examples, metro mapping, involvement of case manager in implementation and patient empowerment strategies. CONCLUSION: Addressing cultural, systemic barriers and developing innovative strategies are of importance to enhance SDM in pancreatic cancer treatment in a network approach. This study provides understanding of SDM implementation in complex healthcare settings and offers valuable guidance for future interventions seeking to improve decision-making processes in pancreatic cancer treatment and beyond.

Enhancing patient-centered care: a randomized study on G-CSF administration preferences in chemotherapy-induced neutropenia.

PURPOSE: Chemotherapy-induced neutropenia poses a significant risk to cancer patients, with pegfilgrastim being commonly used for its prevention. While pegfilgrastim can be administered via prefilled syringe or pen device, patient preferences and experiences with these delivery methods remain unclear. METHODS: We conducted a prospective, open-label, randomized, observational trial (NCT05910164) at the Rafael Institute, France, comparing patient preferences for pegfilgrastim administration using a prefilled syringe versus a prefilled pen device. Patients undergoing chemotherapy and requiring pegfilgrastim were enrolled and randomized 1:1 to receive either syringe or pen first, with crossover administration. Questionnaires assessed patient preferences, learning experiences, autonomy, pain levels, emotional responses, satisfaction with nursing care, and empowerment. RESULTS: Among 150 randomized patients (mean age 58 years; 69% female), both groups showed a preference for the pen device, with significantly higher mean scores favoring pen administration (4.94 ± 1.70 vs. 4.27 ± 1.84; p = 0.00106). Patients reported significantly lower perceived pain with pen administration and stronger positive emotions compared to syringe use. Satisfaction with nursing care was higher with syringe use. Empowerment levels were similar across groups but significantly stronger when using the pen in complete autonomy. CONCLUSION: A preference for pegfilgrastim administration via the pen device was observed, though this may have been influenced by the administration sequence and the absence of syringe self-administration. The insights gained can help inform clinical decision-making and improve patient-centered care in managing chemotherapy-induced neutropenia. TRIAL REGISTRATION: NCT05910164 on June 15, 2023.

The Cancer Patient Empowerment Program: A Comprehensive Approach to Reducing Psychological Distress in Cancer Survivors, with Insights from a Mixed-Model Analysis, Including Implications for Breast Cancer Patients.

BACKGROUND/OBJECTIVES: Psychological distress is a significant concern among cancer patients, negatively affecting their quality of life and adherence to treatment. The Cancer Patient Empowerment Program (CancerPEP) was developed as a comprehensive, home-based intervention aimed at reducing psychological distress by incorporating physical activity, dietary guidance, and social support. This study aimed to evaluate the feasibility, accrual and attrition rates, safety, and effectiveness of the CancerPEP intervention, with and without the biofeedback device, on psychological distress from baseline to 6 months, specifically focusing on the effects of group randomization and the difference between pre- and post-intervention results. METHODS: This single-site, crossover randomized clinical trial included 104 cancer patients who were randomized to receive the CancerPEP intervention, with or without a Heart Rate Variability (HRV) biofeedback monitor. At 6 months, participants who did not receive the device were allowed to use one until the end of the year, while those who did receive the device were followed up to 12 months. Randomization was stratified by the presence or absence of clinically significant psychological distress and metastatic status. Psychological distress was assessed using the Kessler Psychological Distress Scale (K10) at baseline, 6 months, and 12 months. The primary endpoint was the presence of nonspecific psychological distress, as measured by the K10 scale at 6 months from the trial start, based on group randomization. A secondary exploratory analysis assessed psychological distress at baseline, 6 months, and 12 months for both groups, while controlling for group randomization and prognostic covariates. Prognostic covariates included age; comorbidities; time between diagnosis and randomization; treatment modality; relationship status; and use of prescribed medications for anxiety, depression, or both. An exploratory sub-analysis was conducted for the breast cancer subgroup, based on the sample size available after recruitment. The trial is registered at ClinicalTrials.gov (NCT05508412). RESULTS: The provision of the HRV biofeedback monitor in conjunction with the CancerPEP intervention did not significantly affect the primary outcome in either the full sample or the breast cancer subgroup, indicating that the HRV biofeedback provision was not beneficial in this trial. No self-reported or otherwise discovered adverse events at the 6-month mark were observed. About 10% of participants were lost to follow-up in both the early and late HRV monitor provision groups. Participation in the CancerPEP program led to a significant reduction in psychological distress over time. The odds of psychological distress were significantly higher at the start of the trial than at the end of the intervention (aOR = 2.64, 95% CI: 1.53-4.56) or 6 months after the intervention (aOR = 2.94, 95% CI: 1.62-5.30). Similarly, in the breast cancer subgroup, distress was higher at the trial's start than at 6 months, i.e., after the intervention (aOR = 2.25, 95% CI: 1.24-4.08), or at the end of the trial at 12 months (aOR = 2.73, 95% CI: 1.35-5.52). CONCLUSIONS: CancerPEP significantly reduces psychological distress in cancer patients, with consistent improvements noted across various cancer types and stages, including benefits specifically for breast cancer patients. These findings build upon the success of the Prostate Cancer Patient Empowerment Program (PC-PEP), indicating that a similar comprehensive intervention can be advantageous for all cancer patients and may be further tailored to address specific needs. With its holistic approach-encompassing physical, dietary, and psychosocial support-CancerPEP shows promise as a vital component of survivorship care. Ongoing 24-month evaluations will yield critical data on its long-term benefits. Additionally, a randomized trial with a control group (usual care without intervention) for breast cancer patients is currently under way and could potentially guide the integration of CancerPEP into standard oncology care to enhance patient outcomes and quality of life.

A roadmap for empowering cardiovascular disease patients: a 5P-Medicine approach and technological integration.

This article explores the multifaceted concept of cardiovascular disease (CVD) patients' empowerment, emphasizing a shift from compliance-oriented models to active patient participation. In recognizing that cardiovascular disease is a paramount global health challenge, this study illuminates the pressing need for empowering patients, underscoring their role as active participants in their healthcare journey. Grounded in 5P-Medicine principles-Predictive, Preventive, Participatory, Personalized, and Precision Medicine-the importance of empowering CVD patients through analytics, prevention, participatory decision making, and personalized treatments is highlighted. Incorporating a comprehensive overview of patient empowerment strategies, including self-management, health literacy, patient involvement, and shared decision making, the article advocates for tailored approaches aligned with individual needs, cultural contexts, and healthcare systems. Technological integration is examined to enhance patient engagement and personalized healthcare experiences. The critical role of patient-centered design in integrating digital tools for CVD management is emphasized, ensuring successful adoption and meaningful impact on healthcare outcomes. The conclusion proposes vital research questions addressing challenges and opportunities in CVD patient empowerment. These questions stress the importance of medical community research, understanding user expectations, evaluating existing technologies, defining ideal empowerment scenarios, and conducting a literature review for informed advancements. This article lays the foundation for future research, contributing to ongoing patient-centered healthcare evolution, especially in empowering individuals with a 5P-Medicine approach to cardiovascular diseases.

Juxtaposing Nurses' and Patients' Perspectives of Missed Nursing Care: A Descriptive Mixed Method Design.

AIMS: To compare nurses' and patients' reports of missed nursing care, explore patients' perspectives and utilise these insights to elucidate discrepancies or congruence between perceptions. DESIGN: A descriptive mixed-methods design combining quantitative (questionnaires) and qualitative (semi-structured interviews) methods. METHODS: In the quantitative phase, 143 nurses and 643 patients completed the MISSCARE and MISSCARE-Patient surveys. Correlations between their total missed care scores were examined. In the qualitative phase, 68 patients participated in semi-structured interviews analysed using thematic analysis. RESULTS: The correlation between nurses' and patients' perceptions of missed nursing care was nonsignificant. Qualitative findings revealed three themes: (1) patients' need to preserve individuality; (2) most patients attributed missed care to systemic factors, while some attributed it to nurses' attitudes and (3) emotional responses varied from empathetic understanding, inadvertently enabling more missed care, to frustration and assertiveness to ensure receiving necessary care. CONCLUSIONS: This study reveals a significant discrepancy between nurses' and patients' perceptions of missed care. Patient perspectives offer insights into this misalignment, highlighting differences in care priorities and role understanding. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Enhancing nurse-patient communication and patient empowerment are crucial. Healthcare institutions should integrate patient feedback into quality initiatives, create supportive work environments and foster a patient-centred care culture. Effectively marketing nurses' expertise and implementing strategies to manage patient assertiveness are essential. IMPACT: This study addresses the discrepancy in perceptions of missed nursing care between nurses and patients. It reveals how patients' care priorities and attributions influence their experience of missed care. Findings will impact healthcare policymakers, nursing educators and hospital administrators, informing strategies to improve care quality, patient satisfaction and nurse work environments across healthcare settings. REPORTING METHOD: The study has adhered to STROBE guidelines for the quantitative component and SRQR guidelines for the qualitative component. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Needed competence for registered nurses working at a patient-centred telehealth service aimed to engage and empower people living with COPD: A five-month participatory observational study.

BACKGROUND: The global population of older aged 65 and over is increasing, which means an increase in people living with long-term health conditions and multimorbidity. Implementing new digital health technologies enables increased patient empowerment and responsibility, and the ability to respond to changes in their condition themselves, with less involvement of healthcare professionals. Important parameters need to be addressed for this digitally enabled empowerment to be successful, these include increased individual and organizational health literacy, the establishment of joint decision-making activities among patients and healthcare professionals, and efforts that target the individual's ability to manage their condition, which include education to increase skills and providing technology for self-monitoring. OBJECTIVE: To identify needed competencies of digital healthcare professionals to be able to provide the needed services to service users with chronic obstructive pulmonary disease in a 24/7 digital healthcare service. METHOD: Five registered nurses' work was observed weekly for five months. In total 13 participatory observations were conducted. Data from the observations was transcribed and analysed through inductive content analysis. RESULTS: Five main categories were identified in the analysis; 1) tasks, 2) communication, 3) the relationships between the registered nurses, 4) service users, and 5) technology. These categories contain different competencies needed for registered nurses working in a digitalized healthcare system. CONCLUSIONS: Future digital healthcare professionals will require several competencies, to be able to deliver proper care in a digital health community that goes beyond traditional healthcare competencies, including social, technological, and communication skills.

The effect of training to diabetes patients according to planned behavior theory on self-efficacy and patient empowerment: A randomized study.

AIM: To examine the effect of training provided to type 2 diabetes patients according to the theory of planned behavior on self-efficacy and patient empowerment. METHODS: This study, pre-test-post-test active control group single-blind experimental design, was conducted in the internal medicine outpatient clinic of a state hospital between April and October 2023. Participants were randomly assigned to the intervention group (IG; n = 45) and control group (CG; n = 47). The intervention group received a theory-based training program consisting of 5 sessions lasting approximately 40 min. each. Diabetes Management Self-Efficacy Scale, Patient Empowerment Scale and the patient's laboratory results were used for data collection. RESULTS: In the study, while the posttest self-efficacy and patient empowerment scores of the intervention group increased compared to the pretest, there was an decrease in HbA1C level. On the post-test measurements between groups, self-efficacy and patient empowerment scores were higher and effect sizes were higher in the intervention group, while no difference was found in HbA1C values. CONCLUSION: The training program provided according to the theory of planned behavior in diabetes patients provides positive contributions to disease management.

Patient Empowerment for Those Living with Parkinson's Disease.

Parkinson's disease (PD) poses a number of challenges for individuals, affecting them physically, mentally, emotionally, and socially. The complex nature of PD necessitates empowering patients to address their unique needs and challenges, fostering improved health outcomes and a better quality of life. Patient empowerment is a multifaceted concept crucial to enhancing healthcare outcomes, particularly in chronic conditions such as PD. However, defining patient empowerment presents challenges due to its varied interpretations across disciplines and individuals. Essential components include access to information, development of self-care skills, and fostering a supportive environment. Strategies for patient empowerment encompass health literacy, education, and shared decision-making within a trusted healthcare provider-patient relationship. In PD, patient empowerment is crucial due to the disease's phenotypic variability and subjective impact on quality of life. Patients must navigate individualized treatment plans and advocate for their needs, given the absence of objective markers of disease progression. Empowerment facilitates shared decision-making and enables patients to communicate their unique experiences and management goals effectively. This paper provides a comprehensive overview of the dimensions and strategies associated with patient empowerment, its definition and the facilitators that are necessary, emphasizing its critical importance and relevance in Parkinson's management. At the end of this review is a personal perspective as one of the authors is a person with lived experience.

Patient engagement in multimorbidity: a systematic review of patient-reported outcome measures.

Background: People with multimorbidity are increasingly engaged, enabled, and empowered to take responsibility for managing their health status. The purpose of the study was to systematically review and appraise the psychometric properties of tools measuring patient engagement in adults with multimorbidity and their applicability for use within engagement programs. Methods: PubMed, Scopus, Web of Science, and PsycInfo were searched from inception to 1 July 2021. Gray literature was searched using EBSCO host-database "Open dissertation". The reference lists of studies meeting the inclusion criteria were searched to identify additional eligible studies. The screening of the search results and the data extraction were performed independently by two reviewers. The methodological quality of the included studies was evaluated with the COSMIN checklist. Relevant data from all included articles were extracted and summarized in evidence synthesis tables. Results: Twenty articles on eight tools were included. We included tools that measure all four dimensions of patient engagement (i.e., engagement, empowerment, activation, and participation). Their psychometric properties were analyzed separately. Most tools were developed in the last 10 years in Europe or the USA. The comparison of the estimated psychometric properties of the retrieved tools highlighted a significant lack of reliable patient engagement measures for people with multimorbidity. Available measures capture a diversity of constructs and have very limited evidence of psychometric properties that are vital for patient-reported measures, such as invariance, reliability, and responsiveness. Conclusion: This review clarifies how patient engagement, as operationalized in measures purporting to capture this concept, overlaps with, and differs from other related constructs in adults with multimorbidity. The methodological quality of psychometric tools measuring patient engagement in adults with multimorbidity could be improved. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=259968, identifier CRD42021259968.

Discursive framework for a multi-disease digital health passport in Africa: a perspective.

Africa's dual burden of rising incidence of infectious diseases and increasing prevalence of non-communicable diseases (NCDs), such as cardiovascular diseases and diabetes, demands innovative approaches to disease surveillance, response, and cross-border health management in response to growing economic integration and global connectivity. In this context, we propose a discursive framework for the development and implementation of a multi-disease digital health passport (MDDHP) in Africa. The MDDHP would serve as a secure platform for storing and sharing individual health data, offering a comprehensive solution to track and respond to infectious diseases, facilitate the management of NCDs, and improve healthcare access across borders. Empowering individuals to proactively manage their health and improve overall outcomes is a key aspect of the MDDHP. In the paper, we examine the key elements necessary to effectively implement MDDHP, focusing on minimizing risks, maintaining efficacy, and driving its adoption while also taking into consideration the unique contexts of the continent. The paper is intended to provide an understanding of the key principles involved and contribute to the discussion on the development and successful implementation of MDDHP in Africa.

Exploring the need and potential of ambulatory pharmacy practice for empowering patient and care delivery in India.

In recent years, rapidly changing disease profile patterns, shortage & uneven utilization of healthcare professionals contributed massive burden on the Indian healthcare system, which resulted in varying, fragmented, inconsistent healthcare delivery to the patients and poor patient management. Patients often face and experience many challenges like lack of accessibility, poor patient-healthcare provider relationships, and inadequate quality of care, resulting in unnecessary economic burden in managing their health conditions. Thus Indian healthcare reform is essential in enhancing its capacity to fulfill patients' health needs that can be addressed by focusing on key sustainable strategies and initiatives meant for enhancing coordination of care, expanding services accessibility, redeveloping healthcare infrastructure, implementing workforce innovation and strong governance with the incorporation of core principles such as patient-centeredness, integrated care and collaborative care approaches. The clinical and ambulatory pharmacy practice are fragment of the healthcare delivery which delivers pharmaceutical care and fulfils the needs of patients across healthcare settings. This paper focuses on the present & future perspectives of ambulatory pharmacy practice in India and the factors to be considered for implementing it in patient care.

Patient Input into the Electronic Health Record: Co-Designing Solutions with Patients and Healthcare Professionals.

Patient-generated health data (PGHD) is the person's health-related data collected outside the clinical environment. Integrating this data into the electronic health record (EHR) supports better patient-provider communication and shared decision-making, empowering patients to actively manage their health conditions. In this study, we investigated the essential features needed for patients and healthcare providers to effectively integrate PGHD functionality into the EHR system. Through our collaborative design approach involving healthcare professionals (HCPs) and patients, we developed a prototype and suggestion, using Estonia as a model, which is the ideal approach for collecting and integrating PGHD into the EHR.

Enhancing Patient Empowerment and Health Literacy: Integrating Knowledge Graphs with Language Models for Personalized Health Content Delivery.

Health literacy empowers people to access, understand and apply health information to effectively manage their own health and to be an active participant in healthcare decisions. In this paper we propose a conceptual model for cognitive factors affecting health literacy and related socioeconomic aspects. Then we develop the HEALIE Knowledge Graph to represent the model, drawing from various medical ontologies, resources, and insights from domain experts. Finally, we combine the Knowledge Graph with a Large Language Model to generate personalised medical content and showcase the results through an example.

Exploring Pain Reduction through Physical Activity: A Case Study of Seven Fibromyalgia Patients.

Fibromyalgia is a chronic disease that affects a considerable fraction of the global population, primarily women. Physical activity is often recommended as a tool to manage the symptoms. In this study, we tried to replicate a positive result of pain reduction through physical activity. After collecting pain and physical activity data from seven women with fibromyalgia, one patient experienced a considerable reduction in pain intensity. According to the patient, the improvement was related to physical activity. Our study was conducted to investigate the replicability of this result through personalized activity recommendations. Out of the other six patients, three experienced a reduction in pain. The remaining three patients did not experience any pain relief. Our results show that two of these were not able to follow the activity recommendations. These results indicate that physical activity may have a positive effect on chronic pain patients. To estimate how effective physical activity can be for this patient group, an intervention with longer follow-ups and larger sample sizes needs to be performed in the future.

Exploring Diet-Based Treatments for Atrial Fibrillation: Patient Empowerment and Citizen Science as a Model for Quality-of-Life-Centered Solutions.

Atrial fibrillation (AF) is the most common heart rhythm disorder in the Western world. Between the years 2010 and 2019, the global prevalence of AF rose from 33.5 million to 59 million, highlighting the importance of developing equitable treatments for patients. The disease is associated with symptoms such as palpitations, dizziness, fatigue, shortness of breath, and cognitive dysfunction. In addition, AF increases the risk of developing a stroke and heart failure. Despite new insights into risk factors that can lead to the development of AF, the success of current treatments is suboptimal. Numerous risk factors, such as hypertension, diabetes, and obesity, have been associated with the development and progression of AF. As these can be lifestyle-related risk factors, lifestyle modification may be a solution to reduce AF-related symptoms as well as episodes. Research results show that certain dietary changes can reduce AF and numerous risk factors for AF. Increasing attention is being given to Mediterranean and whole, plant-based eating patterns, which emphasize eating grains, legumes, vegetables, fruits, and nuts, while excluding most-or all-animal products. Hence, what are the beneficial aspects of a Mediterranean and plant-based diet which consists mainly of unprocessed foods? In the current review, we discuss the outcomes of diet-based treatments. Moreover, other diet-related treatments, brought up by patient initiatives, are highlighted. These patient-initiated studies include L-glutamine and electrolytes as options to manage AF. Also, we highlight the emerging importance of valuing patient needs and a quality-of-life-centered approach to medicine. As indicated by recent studies and patient experiences, citizen science can create inclusive solutions that lead to patient empowerment and a holistic approach for AF management.