Andrea Schöpf-Lazzarino

Introduction Palliative care has been identified as one of the most inequitable areas of healthcare. In Switzerland, as globally, disparities in end-of-life care (EOLC) exist along socio-demographic lines, shaping the access to and quality of care received across services by patients and their caregivers. Research has linked these disparities to binary gender differences and other aspects of a person’s social position. The GiveCare project aims to provide a systemic understanding of how aspects of gender and diversity intersect to shape the provision of EOLC in Switzerland and to translate the generated knowledge into practice, policy, education and training. Methods and analysis GiveCare employs a sequential mixed-methods design, combining a feminist intersectional approach with a systems thinking lens. It consists of four work packages (WPs): (1) A national survey will assess the perceived awareness of gender and diversity among palliative care professionals. (2) A focused ethnography will provide in-depth insights into the care journeys of patients and their significant others in two specialised inpatient palliative care units. (3) A social network analysis and discrete event modelling will unpack the complexity of such care journeys across inpatient and outpatient settings in the Canton of Zurich. 4. Throughout the process, an integrated knowledge translation approach will help to generate actionable evidence, co-created with patients, caregivers, professionals and policymakers, to enhance inclusivity and equity in EOLC practice and policy. Ethics and dissemination The Ethics Committee of the Canton of Zurich, Switzerland, granted ethical approval for WP2–4 (Req-2025-02241) and issued a waiver for WP1 (Req-2025-00211). The research team will conduct the research in accordance with the Swiss Federal Act on Data Protection and the rules and regulations of the Swiss Federal Data Protection and Information Commissioner. The findings will be disseminated through peer-reviewed publications and conference presentations as well as via the community of practice established through the integrated knowledge translation process.

Background: Chronic illness may cause a financial burden that affects patients, their caregivers, and families. While international research, mostly from the United States, has largely focused on cancer-related financial hardship, less is known about whether financial distress due to other chronic illnesses exists, specifically in countries that have universal health insurance coverage, such as Switzerland. Objective: This study aims to provide insights into how financial burden is discussed by individuals living with chronic illness in Switzerland. Methods: Based on a natural language processing (NLP) approach, alongside topic modeling, a secondary analysis of 180 qualitative interviews of individuals living with chronic illness (dementia, chronic pain, multiple sclerosis, Parkinson disease, and rare diseases) from the Swiss Database of Individual Patient Experiences was conducted. Results: Key categories identified were money issues, disability insurance, general insurance concerns, and work and loss of income. Individuals living with dementia and Parkinson disease appear to be more concerned with money issues, whereas people living with chronic pain, multiple sclerosis, and rare diseases are more burdened by insurance-related concerns, specifically disability insurance-related challenges. Bureaucratic hurdles and employment instability appear to contribute to the financial burden of people living with chronic illness in Switzerland. Conclusions: Financial burden is a complex issue among individuals living with chronic illness in Switzerland. Our findings indicate that effectively addressing this burden requires a comprehensive and context-sensitive strategy. Targeted interventions should consider factors such as insurance eligibility, employment flexibility, and the mitigation of out-of-pocket costs to improve financial stability and quality of life for affected individuals.

Background: The internet is a key source of health information, but the quality of content from popular search engines varies, posing challenges for users—especially those with low health or digital health literacy. To address this, the “tala-med” search engine was developed in 2020 to provide access to high-quality, evidence-based content. It prioritizes German health websites based on trustworthiness, recency, user-friendliness, and comprehensibility, offering category-based filters while ensuring privacy by avoiding data collection and advertisements. Objective: This study aims to evaluate the acceptance and usability of this independent, noncommercial search engine from the users’ perspectives and their actual use of the search engine. Methods: For the questionnaire study, a cross-sectional study design was used. In total, 802 participants were recruited through a web-based panel and were asked to interact with the new search engine before completing a web-based questionnaire. Descriptive statistics and multiple regression analyses were used to assess participants’ acceptance and usability ratings, as well as predictors of acceptance. Furthermore, from October 2020 to June 2021, we used the open-source web analytics platform Matomo to collect behavior-tracking data from consenting users of the search engine. Results: The study indicated positive findings on the acceptance and usability of the search engine, with more than half of the participants willing to reuse (465/802, 58%) and recommend it (507/802, 63.2%). Of the 802 users, 747 (93.1%) valued the absence of advertising. Furthermore, 92.3% (518/561), 93.9% (553/589), 94.7% (567/599), and 96.5% (600/622) of those users who used the filters agreed at least partially that the filter functions were helpful in finding trustworthy, recent, user-friendly, or comprehensible results. Participants criticized some of the search results regarding the selection of domains and shared ideas for potential improvements (eg, for a clearer design). Regression analyses showed that the search engine was especially well accepted among older users, frequent internet users, and those with lower educational levels, indicating an effective targeting of segments of the population with lower health literacy and digital health literacy. Tracking data analysis revealed 1631 sessions, comprising 3090 searches across 1984 unique terms. Users performed 1.64 (SD 1.31) searches per visit on average. They prioritized the search terms “corona,” “back pain,” and “cough.” Filter changes were common, especially for recency and trustworthiness, reflecting the importance that users placed on these criteria. Conclusions: User questionnaires and behavior tracking showed the platform was well received, particularly by older and less educated users, especially for its advertisement-free design and filtering system. While feedback highlighted areas for improvement in design and filter functionality, the search engine’s focus on transparency, evidence-based content, and user privacy shows promise in addressing health literacy and navigational needs. Future updates and research will further refine its effectiveness and impact on promoting access to quality health information.

Introduction People with cancer and other chronic illnesses, their families and caregivers report financial burden as a problem that affects multiple aspects of daily life. While cancer research has coined the term ‘financial toxicity’ to describe the financial consequences, the understanding, development and operationalisation of the concept of financial burden are still incomplete, particularly regarding subjective financial burden and its relationship with well-being. The overall aim is to investigate financial burden and its implications for the well-being of people living with chronic illness, their families, and caregivers in Switzerland. Methods and analysis Transdisciplinary discussion groups and a participatory action design element frame: (1) a conceptualisation using a hybrid concept analysis approach and (2) an assessment of financial burden of chronic illness in relation to well-being. The hybrid concept analysis combines the results of a scoping review with a secondary analysis of existing interviews using computational linguistics and qualitative analysis. The assessment phase will investigate the extent and nature of financial burden through a nationwide survey. Results from mobile diaries/interviews will contribute to both—the conceptualisation and assessment phases. Ethics and dissemination The Ethics Committee of the Canton Zurich, Switzerland, did not consider the research project to fall under the Swiss Law on Human Subjects research and issued a waiver (Req-2O23-01496). The project respects all the rules and regulations in the Swiss Federal Act on Data Protection and those by the Swiss Federal Official Responsible for Data Protection and Transparency. Results will be disseminated through presentations at conferences and publications in peer-reviewed journals and through the established multi-stakeholder network.

BACKGROUND The internet is a key source of health information, but the quality of content from popular search engines varies, posing challenges for users—especially those with low health or digital health literacy. To address this, the “tala-med” search engine was developed in 2020 to provide access to high-quality, evidence-based content. It prioritizes German health websites based on trustworthiness, recency, user-friendliness, and comprehensibility, offering category-based filters while ensuring privacy by avoiding data collection and advertisements. OBJECTIVE This study aims to evaluate the acceptance and usability of this independent, noncommercial search engine from the users’ perspectives and their actual use of the search engine. METHODS For the questionnaire study, a cross-sectional study design was used. In total, 802 participants were recruited through a web-based panel and were asked to interact with the new search engine before completing a web-based questionnaire. Descriptive statistics and multiple regression analyses were used to assess participants’ acceptance and usability ratings, as well as predictors of acceptance. Furthermore, from October 2020 to June 2021, we used the open-source web analytics platform Matomo to collect behavior-tracking data from consenting users of the search engine. RESULTS The study indicated positive findings on the acceptance and usability of the search engine, with more than half of the participants willing to reuse (465/802, 58%) and recommend it (507/802, 63.2%). Of the 802 users, 747 (93.1%) valued the absence of advertising. Furthermore, 92.3% (518/561), 93.9% (553/589), 94.7% (567/599), and 96.5% (600/622) of those users who used the filters agreed at least partially that the filter functions were helpful in finding trustworthy, recent, user-friendly, or comprehensible results. Participants criticized some of the search results regarding the selection of domains and shared ideas for potential improvements (eg, for a clearer design). Regression analyses showed that the search engine was especially well accepted among older users, frequent internet users, and those with lower educational levels, indicating an effective targeting of segments of the population with lower health literacy and digital health literacy. Tracking data analysis revealed 1631 sessions, comprising 3090 searches across 1984 unique terms. Users performed 1.64 (SD 1.31) searches per visit on average. They prioritized the search terms “corona,” “back pain,” and “cough.” Filter changes were common, especially for recency and trustworthiness, reflecting the importance that users placed on these criteria. CONCLUSIONS User questionnaires and behavior tracking showed the platform was well received, particularly by older and less educated users, especially for its advertisement-free design and filtering system. While feedback highlighted areas for improvement in design and filter functionality, the search engine’s focus on transparency, evidence-based content, and user privacy shows promise in addressing health literacy and navigational needs. Future updates and research will further refine its effectiveness and impact on promoting access to quality health information.

Background: An ever-increasing number of patients seek health information via the internet. However, there is an overabundance of differing, often low-quality information available, while a lack of health literacy makes it difficult for patients to understand and assess the quality and trustworthiness of the information at hand. The web portal tala-med was thus conceived as an evidence-based, up-to-date, and trustworthy information resource for lower back pain (LBP), which could be used by primary care physicians (PCPs) and patients during and following consultations for LBP. The current evidence demonstrates that patients with LBP could benefit from web portals. However, the use of such portals by patients remains low, thus limiting their effectiveness. Therefore, it is important to explore the factors that promote or hinder the use of web portals and investigate how patients perceive their usability and utility. Objective: In this study, we investigated the acceptance, usability, and utility of the web portal tala-med from the patient perspective. Methods: This qualitative study was based on telephone interviews with patients who had access to the web portal tala-med from their PCP. We used a semistructured interview guide that consisted of questions about the consultation in which patients were introduced to tala-med, in addition to questions regarding patient perceptions, experiences, and utilization of tala-med. The interviews were recorded, transcribed, and analyzed through framework analysis. Results: A total of 32 half-hour interviews were conducted with 16 female and 16 male patients with LBP. We identified 5 themes of interest: the use of tala-med by PCPs during the consultation, the use of tala-med by patients, its usability, added values derived from its use, and the resultant effects of using tala-med. PCPs used tala-med as an additional information resource for their patients and recommended the exercises. The patients appreciated these exercises and were willing to use tala-med at home. We also identified factors that promoted or hindered the use of tala-med by patients. Most patients rated tala-med positively and considered it a clear, comprehensible, trustworthy, and practical resource. In particular, the trustworthiness of tala-med was seen as an advantage over other information resources. The possibilities offered by tala-med to recap and reflect on the contents of consultations in a time-flexible and independent manner was perceived as an added value to the PCP consultation. Conclusions: Tala-med was well accepted by patients and appeared to be well suited to being used as an add-on to PCP consultations. Patient perception also supports its usability and utility. Tala-med may therefore enrich consultations and assist patients who would otherwise be unable to find good-quality web-based health information on LBP. In addition, our findings support the future development of digital health platforms and their successful use as a supplement to PCP consultations. International Registered Report Identifier (IRRID): RR2-10.1186/s12875-019-0925-8