Citizen Views on an Opt-Out Approach to National Electronic Health Records in Germany: A Small-Scale Qualitative Study.

Objectives: Electronic health records (German: elektronische Patientenakte - ePA) are an important healthcare tool. However, in Germany, current participation remains low for their national ePA. To rectify this, the German government recently adopted an opt-out approach to their national ePA system. The objective of this study is to investigate and provide a brief overview of German public attitudes towards this approach to inform policymakers with evidence-based insights. Methods: Four public focus groups were conducted with 12 German citizens to discuss their opinions on the German governments new opt-out approach to the ePA. Results: Three major thematic categories were identified (Contributors to Opt-Out Implementation, Barriers to Opt-Out Implementation, and Contingent Factors) to describe citizen views on the opt-out approach for the ePA. Conclusion: The public is generally supportive of an opt-out approach to ePAs in Germany, as they see the benefits ePAs can provide to German society; but they are skeptical on how successful this approach might be due to extant issues that policymakers must be aware of in order to successfully implement an opt-out approach for Germany's national ePA system.

Socioeconomic Status and Adherence to Preventive Measures During the COVID-19 Pandemic in Switzerland: A Population Based Digital Cohort Analysis.

Objectives: To assess the association between socioeconomic status (SES) and self-reported adherence to preventive measures in Switzerland during the COVID-19 pandemic. Methods: 4,299 participants from a digital cohort were followed between September 2020 and November 2021. Baseline equivalised disposable income and education were used as SES proxies. Adherence was assessed over time. We investigated the association between SES and adherence using multivariable mixed logistic regression, stratifying by age (below/above 65 years) and two periods (before/after June 2021, to account for changes in vaccine coverage and epidemiological situation). Results: Adherence was high across all SES strata before June 2021. After, participants with higher equivalised disposable income were less likely to adhere to preventive measures compared to participants in the first (low) quartile [second (Adj.OR, 95% CI) (0.56, 0.37-0.85), third (0.38, 0.23-0.64), fourth (0.60, 0.36-0.98)]. We observed similar results for education. Conclusion: No differences by SES were found during the period with high SARS-CoV-2 incidence rates and stringent measures. Following the broad availability of vaccines, lower incidence, and eased measures, differences by SES started to emerge. Our study highlights the need for contextual interpretation when assessing SES impact on adherence to preventive measures.

Natural language processing analysis of the theories of people with multiple sclerosis about causes of their disease.

BACKGROUND: While potential risk factors for multiple sclerosis (MS) have been extensively researched, it remains unclear how persons with MS theorize about their MS. Such theories may affect mental health and treatment adherence. Using natural language processing techniques, we investigated large-scale text data about theories that persons with MS have about the causes of their disease. We examined the topics into which their theories could be grouped and the prevalence of each theory topic. METHODS: A total of 486 participants of the Swiss MS Registry longitudinal citizen science project provided text data on their theories about the etiology of MS. We used the transformer-based BERTopic Python library for topic modeling to identify underlying topics. We then conducted an in-depth characterization of the topics and assessed their prevalence. RESULTS: The topic modeling analysis identifies 19 distinct topics that participants theorize as causal for their MS. The topics most frequently cited are Mental Distress (31.5%), Stress (Exhaustion, Work) (29.8%), Heredity/Familial Aggregation (27.4%), and Diet, Obesity (16.0%). The 19 theory topics can be grouped into four high-level categories: physical health (mentioned by 56.2% of all participants), mental health (mentioned by 53.7%), risk factors established in the scientific literature (genetics, Epstein-Barr virus, smoking, vitamin D deficiency/low sunlight exposure; mentioned by 47.7%), and fate/coincidence (mentioned by 3.1%). Our study highlights the importance of mental health issues for theories participants have about the causes of their MS. CONCLUSIONS: Our findings emphasize the importance of communication between healthcare professionals and persons with MS about the pathogenesis of MS, the scientific evidence base and mental health.

Multiple sclerosis (MS) is a disease that affects the brain and spinal cord, causing a wide range of symptoms. Our study investigated what people living with the disease think causes MS. We analyzed the replies given by 486 people who were questioned about their MS to look for patterns in the responses. We identified 19 distinct themes, notably mental and work-related stress, genetics, and dietary factors, which we grouped into 4 categories: physical health, mental health, established scientific risk factors, and chance. We found that mental health problems were viewed as a key factor for MS. Our work highlights the need for healthcare professionals to have transparent conversations with people with MS about what is known about the disease course and potential causes. In addition, it highlights the importance of fully informing and supporting people with MS regarding their mental health.

From wearable sensor data to digital biomarker development: ten lessons learned and a framework proposal.

Wearable sensor technologies are becoming increasingly relevant in health research, particularly in the context of chronic disease management. They generate real-time health data that can be translated into digital biomarkers, which can provide insights into our health and well-being. Scientific methods to collect, interpret, analyze, and translate health data from wearables to digital biomarkers vary, and systematic approaches to guide these processes are currently lacking. This paper is based on an observational, longitudinal cohort study, BarKA-MS, which collected wearable sensor data on the physical rehabilitation of people living with multiple sclerosis (MS). Based on our experience with BarKA-MS, we provide and discuss ten lessons we learned in relation to digital biomarker development across key study phases. We then summarize these lessons into a guiding framework (DACIA) that aims to informs the use of wearable sensor data for digital biomarker development and chronic disease management for future research and teaching.

Evidence-based coaching of core competencies in epidemiology, using the framework of randomized controlled trials: the Zurich approach.

Teaching epidemiological concepts in academic settings poses a challenge due to the intricate nature of the discipline as both a science and a practice. Whereas traditional classroom-based teaching methods are commonly employed, evidence suggests they may not be the most effective approach for fostering core competencies and skills required in real-life scientific work. In this article, we describe our process of transitioning from traditional classroom teaching of epidemiology towards practice-based coaching to convey epidemiological concepts to bachelor's and master's students in Biomedicine. We chose the framework of randomized controlled trials (RCT) since they offer a great opportunity to teach epidemiological concepts in a hands-on course. This practice-based course encompasses the entire life cycle of a study, allowing students to design and conduct a short-term experiment, analyse its data and prepare a scientific paper. We provide a comprehensive overview of the course structure, content, learning objectives and course evaluation, while also discussing the advantages and disadvantages of this innovative format. Our approach offers a promising alternative to classroom teaching by incorporating practical, hands-on experiences offering students a high level of independence and self-determination, as well as facilitation and coaching by faculty. It has the potential to be applied across diverse academic settings, providing students with valuable skills and competencies in epidemiology.

[Digital environment and population health]. / Environnement digital et santé des populations.

Health and risk of disease are determined by exposure to the physical, socio-economic, and political environment and to this has been added exposure to the digital environment. Our increasingly digital lives have major implications for people's health and its monitoring, as well as for prevention and care. Digital health, which encompasses the use of health applications, connected devices and artificial intelligence medical tools, is transforming medical and healthcare practices. Used properly, it could facilitate patient-centered, inter-professional and data-driven care. However, its implementation raises major concerns and ethical issues, particularly in relation to privacy, equity, and the therapeutic relationship.

La santé et le risque de maladies sont déterminés par l'exposition aux environnements physiques, socio-économiques et politiques, et à cela s'est ajouté l'exposition à l'environnement digital. Notre vie digitale a des implications majeures, d'une part, sur la santé des populations et son monitoring et, d'autre part, sur la prévention et les soins. Ainsi, la santé digitale (digital health), qui englobe l'utilisation d'applications de santé, d'appareils connectés, ou d'outils médicaux d'intelligence artificielle, modifie les pratiques médico-soignantes. Bien utilisée, elle pourrait faciliter les soins centrés sur le patient, interprofessionnels et guidés par les données. Cependant, sa mise en œuvre soulève d'importants craintes et enjeux éthiques en lien notamment avec la protection des données, l'équité et la relation thérapeutique.

What gets measured gets managed: A scoping review of musculoskeletal research conducted within practice-based research networks.

ABSTRACT: Musculoskeletal (MSK) conditions are often managed in primary care settings. To facilitate research and health care quality, practice-based research networks (PBRNs) offer sustained collaborations between clinicians and researchers. A scoping review was conducted to describe characteristics of PBRNs used for MSK research and MSK research conducted through PBRNs. PBRNs were identified from 1) MSK-studies identified In OVID Medline, CINAHL, and Embase databases from inception to 05 February 2023 and in ClinicalTrials.gov; and 2) from PBRN registries and websites. Among active MSK-focused PBRNs (i.e., currently recruiting and conducting research), an assessment of PBRN research good practices was performed. After screening 3025 records, 85 studies from 46 unique PBRNs met our eligibility criteria. Common conditions studied were low back pain (28%), MSK conditions not otherwise specified (25%), and osteoarthritis (19%). 32 PBRNs (70%) were deemed to be active. Among active MSK-focused PBRNs, best practice data management information was retrievable for most (53%). Due to the scarcity of publicly available information, a large proportion of PBRN research good practice items was not assessable. PBRNs have provided an avenue to assess clinical practice and patient outcomes related to MSK conditions. Further work to increase the transparency of MSK PBRN research practices is warranted.

Swiss chiropractic cohort (Swiss ChiCo) pilot study: feasibility for a musculoskeletal cohort study conducted within a nationwide practice-based research network.

PURPOSE: Practice-based research networks are collaborations between clinicians and researchers to advance primary care research. This study aims to assess the feasibility for longitudinal data collection within a newly established chiropractic PBRN in Switzerland. METHODS: A prospective observational cohort feasibility study was performed. PBRN participating chiropractors were asked to recruit patients seeking new conservative health care for musculoskeletal pain from March 28, 2022, to September 28, 2022. Participants completed clinically oriented survey questions and patient-reported outcome measures before the initial chiropractic assessment as well as 1 h, 2 weeks, 6 weeks, and 12 weeks thereafter. Feasibility was assessed through a variety of process, resource, and management metrics. Patient clinical outcomes were also assessed. RESULTS: A total of 76 clinicians from 35 unique primary care chiropractic clinics across Switzerland participated. A total of 1431 patients were invited to participate, of which 573 (mean age 47 years, 51% female) were enrolled. Patient survey response proportions were 76%, 64%, 61%, and 56%, at the 1-h, 2-, 6-, and 12-week survey follow-ups, respectively. Evidence of an association was found between increased patient age (OR = 1.03, 95%CI 1.01-1.04), patient from a German-speaking region (OR = 1.81, 95%CI 1.17-2.86), non-smokers (OR = 1.89, 95%CI 1.13-3.17), and increased pain impact score at baseline (OR = 1.18, 95%CI 1.01-1.38) and response to all surveys. CONCLUSION: The Swiss ChiCo pilot study exceeded its prespecified feasibility objectives. Nationwide longitudinal data capture was highly feasible. Similar to other practice-based cohorts, participant retention remains a challenge. Trial registration Swiss chiropractic cohort (Swiss ChiCo) pilot study (ClinicalTrials.gov identifier: NCT05116020).

Exploring the Major Barriers to Physical Activity in Persons With Multiple Sclerosis: Observational Longitudinal Study.

BACKGROUND: Physical activity (PA) represents a low-cost and readily available means of mitigating multiple sclerosis (MS) symptoms and alleviating the disease course. Nevertheless, persons with MS engage in lower levels of PA than the general population. OBJECTIVE: This study aims to enhance the understanding of the barriers to PA engagement in persons with MS and to evaluate the applicability of the Barriers to Health Promoting Activities for Disabled Persons (BHADP) scale for assessing barriers to PA in persons with MS, by comparing the BHADP score with self-reported outcomes of fatigue, depression, self-efficacy, and health-related quality of life, as well as sensor-measured PA. METHODS: Study participants (n=45; median age 46, IQR 40-51 years; median Expanded Disability Status Scale score 4.5, IQR 3.5-6) were recruited among persons with MS attending inpatient neurorehabilitation. They wore a Fitbit Inspire HR (Fitbit Inc) throughout their stay at the rehabilitation clinic (phase 1; 2-4 wk) and for the 4 following weeks at home (phase 2; 4 wk). Sensor-based step counts and cumulative minutes in moderate to vigorous PA were computed for the last 7 days at the clinic and at home. On the basis of PA during the last 7 end-of-study days, we grouped the study participants as active (≥10,000 steps/d) and less active (<10,000 steps/d) to explore PA barriers compared with PA level. PA barriers were repeatedly assessed through the BHADP scale. We described the relevance of the 18 barriers of the BHADP scale assessed at the end of the study and quantified their correlations with the Spearman correlation test. We evaluated the associations of the BHADP score with end-of-study reported outcomes of fatigue, depression, self-efficacy, and health-related quality of life with multivariable regression models. We performed separate regression analyses to examine the association of the BHADP score with different sensor-measured outcomes of PA. RESULTS: The less active group reported higher scores for the BHADP items Feeling what I do doesn't help, No one to help me, and Lack of support from family/friends. The BHADP items Not interested in PA and Impairment were positively correlated. The BHADP score was positively associated with measures of fatigue and depression and negatively associated with self-efficacy and health-related quality of life. The BHADP score showed an inverse relationship with the level of PA measured but not when dichotomized according to the recommended PA level thresholds. CONCLUSIONS: The BHADP scale is a valid and well-adapted tool for persons with MS because it reflects common MS symptoms such as fatigue and depression, as well as self-efficacy and health-related quality of life. Moreover, decreases in PA levels are often related to increases in specific barriers in the lives of persons with MS and should hence be addressed jointly in health care management.

Digital Transformation of Public Health for Noncommunicable Diseases: Narrative Viewpoint of Challenges and Opportunities.

The recent SARS-CoV-2 pandemic underscored the effectiveness and rapid deployment of digital public health interventions, notably the digital proximity tracing apps, leveraging Bluetooth capabilities to trace and notify users about potential infection exposures. Backed by renowned organizations such as the World Health Organization and the European Union, digital proximity tracings showcased the promise of digital public health. As the world pivots from pandemic responses, it becomes imperative to address noncommunicable diseases (NCDs) that account for a vast majority of health care expenses and premature disability-adjusted life years lost. The narrative of digital transformation in the realm of NCD public health is distinct from infectious diseases. Public health, with its multifaceted approach from disciplines such as medicine, epidemiology, and psychology, focuses on promoting healthy living and choices through functions categorized as "Assessment," "Policy Development," "Resource Allocation," "Assurance," and "Access." The power of artificial intelligence (AI) in this digital transformation is noteworthy. AI can automate repetitive tasks, facilitating health care providers to prioritize personal interactions, especially those that cannot be digitalized like emotional support. Moreover, AI presents tools for individuals to be proactive in their health management. However, the human touch remains irreplaceable; AI serves as a companion guiding through the health care landscape. Digital evolution, while revolutionary, poses its own set of challenges. Issues of equity and access are at the forefront. Vulnerable populations, whether due to economic constraints, geographical barriers, or digital illiteracy, face the threat of being marginalized further. This transformation mandates an inclusive strategy, focusing on not amplifying existing health disparities but eliminating them. Population-level digital interventions in NCD prevention demand societal agreement. Policies, like smoking bans or sugar taxes, though effective, might affect those not directly benefiting. Hence, all involved parties, from policy makers to the public, should have a balanced perspective on the advantages, risks, and expenses of these digital shifts. For a successful digital shift in public health, especially concerning NCDs, AI's potential to enhance efficiency, effectiveness, user experience, and equity-the "quadruple aim"-is undeniable. However, it is vital that AI-driven initiatives in public health domains remain purposeful, offering improvements without compromising other objectives. The broader success of digital public health hinges on transparent benchmarks and criteria, ensuring maximum benefits without sidelining minorities or vulnerable groups. Especially in population-centric decisions, like resource allocation, AI's ability to avoid bias is paramount. Therefore, the continuous involvement of stakeholders, including patients and minority groups, remains pivotal in the progression of AI-integrated digital public health.

What is public trust in national electronic health record systems? A scoping review of qualitative research studies from 1995 to 2021.

Objective: Public trust in national electronic health record systems is essential for the successful implementation within a healthcare system. Research investigating public trust in electronic health records is limited, leading to a lack of conceptual clarity. In response, the objective of this study is to gain a clearer understanding on the conceptualizations of public trust in electronic health records, which can support the implementation of national electronic health record systems. Methods: Guided by the PRISMA-ScR checklist, a scoping review of 27 qualitative studies on public trust in electronic health records found between January 2022 and June 2022 was conducted using an inclusive search method. In an iterative process, conceptual themes were derived describing the promoters and outcomes of public trust in electronic health records. Results: Five major conceptual themes with 15 sub-themes were present across the literature. Comprehension, autonomy, and data protection promote public trust in electronic health record; while personal and system benefits are the outcomes once public trust in electronic health records exists. Additional findings highlight the pivotal role of healthcare actors for the public trust building process. Conclusions: The results underscore comprehension, autonomy, and data protection as important themes that help ascertain and solidify public trust in electronic health records. As well, health system actors have the capacity to promote or hinder national electronic health record implementation, depending on their actions and how the public perceives those actions. The findings can assist researchers, policymakers, and other health system actors in attaining a better understanding of the intricacies of public trust in electronic health records.

Implementation of Remote Activity Sensing to Support a Rehabilitation Aftercare Program: Observational Mixed Methods Study With Patients and Health Care Professionals.

BACKGROUND: Physical activity is central to maintaining the quality of life for patients with complex chronic conditions and is thus at the core of neurorehabilitation. However, maintaining activity improvements in daily life is challenging. The novel Stay With It program aims to promote physical activity after neurorehabilitation by cultivating self-monitoring skills and habits. OBJECTIVE: We examined the implementation of the Stay With It program at the Valens Rehabilitation Centre in Switzerland using the normalization process theory framework, focusing on 3 research aims. We aimed to examine the challenges and facilitators of program implementation from the perspectives of patients and health care professionals. We aimed to evaluate the potential of activity sensors to support program implementation and patient acceptance. Finally, we aimed to evaluate patients' engagement in physical activity after rehabilitation, patients' self-reported achievement of home activity goals, and factors influencing physical activity. METHODS: Patients were enrolled if they had a disease that was either chronic or at risk for chronicity and participated in the Stay With It program. Patients were assessed at baseline, the end of rehabilitation, and a 3-month follow-up. The health care professionals designated to deliver the program were surveyed before and after program implementation. We used a mixed methods approach combining standardized questionnaires, activity-sensing data (patients only), and free-text questions. RESULTS: This study included 23 patients and 13 health care professionals. The diverse needs of patients and organizational hurdles were major challenges to program implementation. Patients' intrinsic motivation and health care professionals' commitment to refining the program emerged as key facilitators. Both groups recognized the value of activity sensors in supporting program implementation and sustainability. Although patients appreciated the sensor's ability to monitor, motivate, and quantify activity, health care professionals saw the sensor as a motivational tool but expressed concerns about technical difficulties and potential inaccuracies. Physical activity levels after patients returned home varied considerably, both within and between individuals. The self-reported achievement of activity goals at home also varied, in part because of vague definitions. Common barriers to maintaining activity at home were declining health and fatigue often resulting from heat and pain. At the 3-month follow-up, 35% (8/23) of the patients withdrew from the study, with most citing deteriorating physical health as the reason and that monitoring and discussing their low activity would negatively affect their mental health. CONCLUSIONS: Integrating aftercare programs like Stay With It into routine care is vital for maintaining physical activity postrehabilitation. Although activity trackers show promise in promoting motivation through monitoring, they may lead to frustration during health declines. Their acceptability may also be influenced by an individual's health status, habits, and technical skills. Our study highlights the importance of considering health care professionals' perspectives when integrating new interventions into routine care.

Promoting participation in remote digital health studies: An expert interview study.

Background: Remote digital health studies are on the rise and promise to reduce the operational inefficiencies of in-person research. However, they encounter specific challenges in maintaining participation (enrollment and retention) due to their exclusive reliance on technology across all study phases. Objective: The goal of this study was to collect experts' opinions on how to facilitate participation in remote digital health studies. Method: We conducted 13 semi-structured interviews with principal investigators, researchers, and software developers who had recent experiences with remote digital health studies. Informed by the Unified Theory of Acceptance and Use of Technology (UTAUT) framework, we performed a thematic analysis and mapped various approaches to successful study participation. Results: Our analyses revealed four themes: (1) study planning to increase participation, where experts suggest that remote digital health studies should be planned based on adequate knowledge of what motivates, engages, and disengages a target population; (2) participant enrollment, highlighting that enrollment strategies should be selected carefully, attached to adequate support, and focused on inclusivity; (3) participant retention, with strategies that minimize the effort and complexity of study tasks and ensure that technology is adapted and responsive to participant needs, and (4) requirements for study planning focused on the development of relevant guidelines to foster participation in future studies. Conclusions: Our findings highlight the significant requirements for seamless technology and researcher involvement in enabling high remote digital health study participation. Future studies can benefit from collected experiences and the development of guidelines to inform planning that balances participant and scientific requirements.

Mental health challenges and digital platform opportunities in patients and families affected by pediatric neuromuscular diseases - experiences from Switzerland.

Receiving the diagnosis of a severe disease may present a traumatic event for patients and their families. To cope with the related challenges, digital interventions can be combined with traditional psychological support to help meet respective needs. We aimed to 1) discuss the most common consequences and challenges for resilience in Neuro Muscular Disease patients and family members and 2) elicit practical needs, concerns, and opportunities for digital platform use. We draw from findings of a transdisciplinary workshop and conference with participants ranging from the fields of clinical practice to patient representatives. Reported consequences of the severe diseases were related to psychosocial challenges, living in the nexus between physical development and disease progression, social exclusion, care-related challenges, structural and financial challenges, and non-inclusive urban design. Practical needs and concerns regarding digital platform use included social and professional support through these platforms, credibility and trust in online information, and concerns about privacy and informed consent. Furthermore, the need for safe, reliable, and expert-guided information on digital platforms and psychosocial and relationship-based digital interventions was expressed. There is a need to focus on a family-centered approach in digital health and social care and a further need in researching the suitability of digital platforms to promote resilience in the affected population. Our results can also inform city councils regarding investments in inclusive urban design allowing for disability affected groups to enjoy a better quality of life.

Interplay of Digital Proximity App Use and SARS-CoV-2 Vaccine Uptake in Switzerland: Analysis of Two Population-Based Cohort Studies.

Objectives: Our study aims to evaluate developments in vaccine uptake and digital proximity tracing app use in a localized context of the SARS-CoV-2 pandemic. Methods: We report findings from two population-based longitudinal cohorts in Switzerland from January to December 2021. Failure time analyses and Cox proportional hazards regression models were conducted to assess vaccine uptake and digital proximity tracing app (SwissCovid) uninstalling outcomes. Results: We observed a dichotomy of individuals who did not use the SwissCovid app and did not get vaccinated, and who used the SwissCovid app and got vaccinated during the study period. Increased vaccine uptake was observed with SwissCovid app use (aHR, 1.51; 95% CI: 1.40-1.62 [CI-DFU]; aHR, 1.79; 95% CI: 1.62-1.99 [CSM]) compared to SwissCovid app non-use. Decreased SwissCovid uninstallation risk was observed for participants who got vaccinated (aHR, 0.55; 95% CI: 0.38-0.81 [CI-DFU]; aHR, 0.45; 95% CI: 0.27-0.78 [CSM]) compared to participants who did not get vaccinated. Conclusion: In evolving epidemic contexts, these findings underscore the need for communication strategies as well as flexible digital proximity tracing app adjustments that accommodate different preventive measures and their anticipated interactions.

Challenges and best practices for digital unstructured data enrichment in health research: A systematic narrative review.

Digital data play an increasingly important role in advancing health research and care. However, most digital data in healthcare are in an unstructured and often not readily accessible format for research. Unstructured data are often found in a format that lacks standardization and needs significant preprocessing and feature extraction efforts. This poses challenges when combining such data with other data sources to enhance the existing knowledge base, which we refer to as digital unstructured data enrichment. Overcoming these methodological challenges requires significant resources and may limit the ability to fully leverage their potential for advancing health research and, ultimately, prevention, and patient care delivery. While prevalent challenges associated with unstructured data use in health research are widely reported across literature, a comprehensive interdisciplinary summary of such challenges and possible solutions to facilitate their use in combination with structured data sources is missing. In this study, we report findings from a systematic narrative review on the seven most prevalent challenge areas connected with the digital unstructured data enrichment in the fields of cardiology, neurology and mental health, along with possible solutions to address these challenges. Based on these findings, we developed a checklist that follows the standard data flow in health research studies. This checklist aims to provide initial systematic guidance to inform early planning and feasibility assessments for health research studies aiming combining unstructured data with existing data sources. Overall, the generality of reported unstructured data enrichment methods in the studies included in this review call for more systematic reporting of such methods to achieve greater reproducibility in future studies.

Changes in Healthcare Utilization During the COVID-19 Pandemic and Potential Causes-A Cohort Study From Switzerland.

Objectives: To describe the frequency of and reasons for changes in healthcare utilization in those requiring ongoing treatment, and to assess characteristics associated with change, during the second wave of the pandemic. Methods: Corona Immunitas e-cohort study (age ≥20 years) participants completed monthly questionnaires. We compared participants reporting a change in healthcare utilization with those who did not using descriptive and bivariate statistics. We explored characteristics associated with the number of changes using negative binomial regression. Results: The study included 3,190 participants from nine research sites. One-fifth reported requiring regular treatment. Among these, 14% reported a change in healthcare utilization, defined as events in which participants reported that they changed their ongoing treatment, irrespective of the reason. Reasons for change were medication changes and side-effects, specifically for hypertension, or pulmonary embolism treatment. Females were more likely to report changes [Incidence Rate Ratio (IRR) = 2.15, p = 0.002]. Those with hypertension were least likely to report changes [IRR = 0.35, p = 0.019]. Conclusion: Few of those requiring regular treatment reported changes in healthcare utilization. Continuity of care for females and chronic diseases besides hypertension must be emphasized.

Blending citizen science with natural language processing and machine learning: Understanding the experience of living with multiple sclerosis.

The emergence of new digital technologies has enabled a new way of doing research, including active collaboration with the public ('citizen science'). Innovation in machine learning (ML) and natural language processing (NLP) has made automatic analysis of large-scale text data accessible to study individual perspectives in a convenient and efficient fashion. Here we blend citizen science with innovation in NLP and ML to examine (1) which categories of life events persons with multiple sclerosis (MS) perceived as central for their MS; and (2) associated emotions. We subsequently relate our results to standardized individual-level measures. Participants (n = 1039) took part in the 'My Life with MS' study of the Swiss MS Registry which involved telling their story through self-selected life events using text descriptions and a semi-structured questionnaire. We performed topic modeling ('latent Dirichlet allocation') to identify high-level topics underlying the text descriptions. Using a pre-trained language model, we performed a fine-grained emotion analysis of the text descriptions. A topic modeling analysis of totally 4293 descriptions revealed eight underlying topics. Five topics are common in clinical research: 'diagnosis', 'medication/treatment', 'relapse/child', 'rehabilitation/wheelchair', and 'injection/symptoms'. However, three topics, 'work', 'birth/health', and 'partnership/MS' represent domains that are of great relevance for participants but are generally understudied in MS research. While emotions were predominantly negative (sadness, anxiety), emotions linked to the topics 'birth/health' and 'partnership/MS' was also positive (joy). Designed in close collaboration with persons with MS, the 'My Life with MS' project explores the experience of living with the chronic disease of MS using NLP and ML. Our study thus contributes to the body of research demonstrating the potential of integrating citizen science with ML-driven NLP methods to explore the experience of living with a chronic condition.

Development of hybrid immunity during a period of high incidence of Omicron infections.

BACKGROUND: Seroprevalence and the proportion of people with neutralizing activity (functional immunity) against SARS-CoV-2 variants were high in early 2022. In this prospective, population- based, multi-region cohort study, we assessed the development of functional and hybrid immunity (induced by vaccination and infection) in the general population during this period of high incidence of infections with Omicron variants. METHODS: We randomly selected and assessed individuals aged ≥16 years from the general population in southern (n = 739) and north-eastern (n = 964) Switzerland in March 2022. We assessed them again in June/July 2022, supplemented with a random sample from western (n = 850) Switzerland. We measured SARS-CoV-2 specific IgG antibodies and SARS-CoV-2 neutralizing antibodies against three variants (ancestral strain, Delta, Omicron). RESULTS: Seroprevalence remained stable from March 2022 (97.6%, n = 1894) to June/July 2022 (98.4%, n = 2553). In June/July, the percentage of individuals with neutralizing capacity against ancestral strain was 94.2%, against Delta 90.8% and against Omicron 84.9%, and 50.6% developed hybrid immunity. Individuals with hybrid immunity had highest median levels of anti-spike IgG antibodies titres [4518 World Health Organization units per millilitre (WHO U/mL)] compared with those with only vaccine- (4304 WHO U/mL) or infection- (269 WHO U/mL) induced immunity, and highest neutralization capacity against ancestral strain (hybrid: 99.8%, vaccinated: 98%, infected: 47.5%), Delta (hybrid: 99%, vaccinated: 92.2%, infected: 38.7%) and Omicron (hybrid: 96.4%, vaccinated: 79.5%, infected: 47.5%). CONCLUSIONS: This first study on functional and hybrid immunity in the Swiss general population after Omicron waves showed that SARS-CoV-2 has become endemic. The high levels of antibodies and neutralization support the emerging recommendations of some countries where booster vaccinations are still strongly recommended for vulnerable persons but less so for the general population.