Logo: to the web site of Uppsala University

Young people are among the most intensive users of digital and generative artificial intelligence (GenAI)-enabled mental health tools, yet they remain underrepresented in the research and design processes that shape these technologies. Although participatory approaches such as co-design and patient and public involvement are widely endorsed as best practices, youth involvement in digital youth mental health (DYMH) research is often inconsistent, superficial, or limited to late-stage consultation. This participation gap risks producing interventions that are misaligned with young people's lived experiences, priorities, and vulnerabilities, particularly in the context of rapidly evolving and scalable GenAI systems. This Viewpoint aims to reexamine the underlying drivers of the participation gap in DYMH research; clarify how participation is conceptualized and implemented across disciplines; and propose concrete, actionable recommendations to support more meaningful and consistent youth involvement across the research life cycle. We draw on interdisciplinary literature from digital mental health, human-computer interaction, child-computer interaction, and health research policy. Our Viewpoint integrates conceptual frameworks (eg, Lundy's model of participation), existing reviews of co-design practices, and emerging evidence on GenAI in mental health. We adopt a life cycle-oriented perspective to examine how youth participation is distributed across stages of research and development, including problem formulation, design, implementation, and evaluation. We identify 3 interrelated drivers of the participation gap. First, conceptual and linguistic fragmentation obscures what participation entails in practice, with terms such as co-design, participatory design, user-centered design, and patient and public involvement used inconsistently across disciplines. Second, youth involvement is uneven across the research life cycle, with participation often concentrated in early ideation or usability testing but largely absent from upstream decision-making and downstream evaluation. Third, institutional barriers-including ethics review processes, consent requirements, funding constraints, and adult-centric research norms-systematically limit meaningful youth partnership. These challenges are amplified in the context of GenAI, where opaque "black box" systems, simulated therapeutic interactions, and rapid deployment cycles introduce distinct risks if youth perspectives are not integrated. We propose a set of minimum expectations to address these gaps, including explicit specification of participatory models, life cycle mapping of youth involvement, reporting of youth influence on decisions, dedicated funding for participation, proportional ethics frameworks, and mechanisms for youth-informed governance of GenAI systems. Closing the participation gap in DYMH research is both an ethical imperative and a practical necessity. Moving beyond aspirational commitments requires embedding youth participation as a standard, technologies, failure to do so risks producing interventions that are scalable but not safe, credible, or responsive to the needs of young people.

In countries where patients can access the electronic health record (EHR), they enhance its accuracy by requesting corrections of EHR errors (EHRrors). This study compared national legislative frameworks in Sweden, the UK, and Germany governing patient rights to changing, adding, and deleting EHR information against General Data Protection Regulation (GDPR) and the forthcoming European Health Data Space (EHDS). We found that while national laws largely mirrored GDPR, they offered different additional mechanisms to EHRror management. Importantly, the EHDS positions the rectification process in the digital health service, opening the possibility for in-EHR patient input, which may further patients’ contribution to maintaining accurate clinical documentation and enhance patient agency.

INTRODUCTION: Clinical documentation is a significant driver of burnout among physicians. Ambient artificial intelligence (AI) scribes, which leverage generative large language models to automate the creation of clinical notes from patient-physician conversations, are rapidly emerging as a potential solution. While these tools promise to enhance efficiency and reduce administrative tasks, concerns about the quality, accuracy and potential biases persist. There is now a need for a systematic synthesis of evidence to evaluate the impact of these technologies in clinical practice. To assess the effects of ambient AI scribes on physicians' clinical documentation, the specific objectives are to: (1) evaluate the effectiveness of these tools on documentation, including accuracy and completeness; (2) synthesise evidence on the impact on physician efficiency after adoption, including time spent on documentation and (3) examine physicians' satisfaction with these tools, including physicians' perceived burden.

METHODS AND ANALYSIS: A systematic review of quantitative or mixed-method studies as well as preprints will be conducted. We will perform a comprehensive search of four electronic databases (PubMed, IEEE Xplore, APA PsycInfo and Web of Science, along with medRix and ClinicalTrials.gov for preprints) for empirical studies published between January 2023 and March 2026. The review will synthesise studies comparing physicians' use of ambient AI scribes with traditional documentation approaches. Given the anticipated heterogeneity of the studies, a narrative synthesis will be employed to summarise the findings. Where common quantitative outcomes exist, effect sizes will be calculated using Hedges' g, mean differences or risk ratios/odds ratios as appropriate. The overall quality of evidence will be assessed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) framework.

ETHICS AND DISSEMINATION: As no patient data are involved in the data collection, no ethical approval is acquired. Results will be disseminated in a peer-reviewed, open-access journal, and presented at relevant academic conferences.

PROSPERO REGISTRATION NUMBER: CRD420251149086.

Introduction

Patient-accessible electronic health records (PAEHRs) offer benefits, such as supporting self-management and care engagement. However, some patients, particularly those with mental health conditions, might experience negative emotions such as worry when reading unexpected or sensitive information in their PAEHRs.

Methods

A web-based survey of 4459 respondents distributed via the Finnish national patient portal included multiple-choice and open-ended questions. Respondents consisted of two patient groups who had received care either for 1) mental health or 2) other conditions. Inductive content analysis was performed to explore the kind of information that was perceived as sensitive in the PAEHR. Associations between sociodemographic factors including the type of care and reporting health information as sensitive were calculated via the multivariable binary logistic regression analysis.

Results

Mental health (61.3%), and intimate health (8.3%) were the most frequently mentioned as especially sensitive types of information among respondents, who also stressed that the sensitive nature of the health information depended on the context. Within the mental health information type, therapy or treatment was most often mentioned (3.5%) as sensitive. Respondents who had received mental health care were significantly more likely to perceive certain information as sensitive (53.2%) than other patients (28.8%; Adjusted OR=2.783, 95% CI=[2.333, 3.319], p<0.001).

Conclusions

This study delves into the sensitive character of mental health information within PAEHR. The sensitivity of information also depends on the consequences for the patients when data will be used in another context. Documenting sensitive information carefully and safeguarding it is recommended to maintain trust in electronic health records and healthcare.

Healthcare worldwide is undergoing a transition where patients are increasingly granted access to their electronic health records (EHRs). However, online record access (ORA) for vulnerable groups like children and adolescents remains a topic of active debate. Minors’ experiences of patient-accessible electronic health records (PAEHRs) and related ethical questions remain underexplored.

The thesis aim was to explore stakeholder experiences of online access to minors’ EHRs, through six papers: 1) a case study comparing minors’ and guardian use of PAEHRs in Sweden and Finland and the use of country-specific access control practices; 2) a literature review summarising knowledge about stakeholder views and experiences on ORA for minors and parents; 3-4) two survey studies examining Swedish adolescents’ reasons for reading EHRs, utility, the link between use frequency and encouragement, as well as views on EHR security and privacy, attitudes toward information-sharing, and definitions of sensitive information; and 5-6) two mixed-methods studies exploring the views, awareness and benefits and risks with respect to ORA regulations among Swedish adolescents with serious health issues, their parents, and paediatric oncology HCPs. Findings were analysed using a framework of biomedical ethical principles.

Adolescents in Finland, who receive ORA earlier, showed higher PAEHR use than their Swedish counterparts. In Sweden, few applications for extended access were found. Most prior work was US-based that left minors’ experiences, especially beyond chronic illness, largely underexplored. Swedish adolescent portal users viewed information as useful and higher use was related to HCP encouragement. Although security was rated highly, many wished to manage who could access their EHRs. Mental healthcare was the most cited as sensitive. Adolescents with serious health issues, their parents, and oncology HCPs criticised the current gap in ORA during adolescence. Parents were concerned about early adolescent ORA, while HCPs worried about the impact of parental ORA on EHR quality, and lacked knowledge of access extension.

In conclusion, while ORA showed potential for engaging adolescents in their care early and facilitating parental support, risks remain for EHR quality. Education and dialogue among stakeholders, along with addressing HCP concerns, are essential efforts to make ORA an effective tool for enhancing adolescent health outcomes.

During recent decades, providing patients with access to their electronic health records (EHRs) has advanced in healthcare. In the European Union (EU), the General Data Protection Regulation provides individuals with the right to check their data in registries such as EHRs. A proposal for a European Health Data Space has been launched, which will further strengthen patients’ right to have online access to their EHRs throughout Europe. Against these policy changes, scant attention has been paid to the ethical question about whether adolescents and parents should access the adolescent’s EHR, and if so, under what conditions.

Patients' online record access (ORA) enables patients to involve their informal caregivers in care management by sharing health information, either through proxy access functionality or informally. The European Health Data Space mandates that member countries should ensure that patients can assign a proxy to have online access to their health data. In this study, we aimed to explore the current state of proxy ORA in four countries with mature ORA implementations; Sweden, Norway, Finland, and Estonia. We identified three types of proxy ORA; full proxy ORA, no proxy ORA, and controlled proxy ORA. Further guidance on ethically sound and secure proxy ORA functionality that complies with national and EU regulations and policies is warranted to ensure equal rights for citizens across Europe.

Patients' online record access (ORA) enables patients with complex diagnoses like cancer to involve their informal caregivers in care management by sharing health information, either through proxy access functionality or informally. The extent to which cancer patients use electronic health records (EHRs) for information sharing is unknown. Using the NORDeHEALTH 2022 Patient Survey, we compared cancer and other patients' reasons for using the EHR in Sweden. We found that although the majority of respondents did not access their records with the purpose of sharing with family or friends, cancer patients were more likely to state this as a reason than other patients, or those with no recent treatment experience. This indicates an increased need for proxy access functionality in patient portals among cancer patients.