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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.

This study explored the perspectives of people with Parkinson's disease (PwP) involved in the co-design of AI tools for PD care. The aim was to understand PwP perspectives on AI tools and identify factors influencing their engagement. A qualitative triangulation of 13 interviews and two focus groups were conducted with a panel of 14 PwPs from six European countries. Data analysis employed inductive content analysis which resulted in 3 categories. Patients emphasized the potential of AI tools to increase patient agency and improve healthcare through co-design. While AI-based medication response prediction was highly regarded, risk assessment tools were met with skepticism. Participants stressed the importance of taking into account disease complexity, individual factors, data protection, and transparency in AI model development. Participants strongly believed in the co-design process, and the value that it could bring to all parties involved in the development of the AI-based tools, ensuring the development of tools that are beneficial and trustworthy.

Objectives

Most adult patients in England now have access to their primary care electronic health record (EHR), including free-text consultation notes, via the NHS App or other online services. As EHRs were not designed for patient audiences, this study aimed to explore patients’ and carers’ perspectives and understanding of simulated consultation notes.

Methods

One interview and five focus groups were conducted with 26 patients and carers from a purposive sample of underserved communities in England between April and May 2023. Participants’ understanding and views were elicited regarding five vignettes about patient consultation scenarios and corresponding simulated primary care EHR entries. Verbatim transcripts were analysed inductively using thematic analysis.

Results

Most participants struggled to fully understand the simulated consultation notes, particularly medical acronyms, clinician shorthand and non-clinical abbreviations. Participants also identified issues which may cause unintended offence or anxiety, and made suggestions about how EHRs may be improved to meet the needs of patient audiences and maintain positive patient-clinician relationships.

Conclusions

Opening up online record access to include patient audiences necessitates a significant cultural shift in the way that consultation notes are written and used. Participants proposed technological and documentation adaptations to enhance understanding, support diverse patient needs and maintain positive patient-clinician relationships.

Practice implications

To fully realise the benefits of patient online records access, it is important for consultation notes to be written in a way that patients find meaningful, while maintaining their clinical integrity. To optimise NHS England’s investment in this policy and avoid exacerbating health inequalities, it is essential to ensure all patients can access the benefits of online access to their EHR. Healthcare professionals need to be supported to manage the challenges of writing consultation notes for patient audiences, while continuing to maintain effective clinical care.

Background: Patients in the United States have recently gained federally mandated, free, and ready electronic access to clinicians' computerized notes in their medical records ("open notes"). This change from longstanding practice can benefit patients in clinically important ways, but studies show some patients feel judged or stigmatized by words or phrases embedded in their records. Therefore, it is imperative that clinicians adopt documentation techniques that help both to empower patients and minimize potential harms. Objective: At a time when open and transparent communication among patients, families, and clinicians can spread more easily throughout medical practice, this inquiry aims to develop informed guidelines for documentation in medical records. Methods: Through a series of focus groups, preliminary guidelines for documentation language in medical records were developed by health professionals and patients. Using a structured focus group decision guide, we conducted 4 group meetings with different sets of 27 participants: physicians experienced with writing open notes (n=5), patients accustomed to reviewing their notes (n=8), medical student educators (n=7), and resident physicians (n=7). To generate themes, we used an iterative coding Results: The participants identified 10 important guidelines as a preliminary framework for developing notes sensitive to patients' needs. Conclusions: The process identified 10 discrete themes that can help clinicians use and spread patient-centered documentation.

Background: Online record access (ORA) is being increasingly implemented internationally. Despite reported benefits for patients, health care professionals (HCPs) have raised concerns about potential disadvantages. To date, no review has examined the empirical evidence on whether and how documentation changes following the introduction of patients’ ORA. Objective: This scoping review aimed to examine potential subjective and objective changes in HCPs’ documentation after using patients’ ORA. Methods: A scoping review was conducted using a methodological framework for scoping reviews and data from 4 electronic databases. Studies examining objective and subjective changes in clinical documentation following the implementation of ORA, specifically those related to actual use experiences (rather than previous expectations), up to July 2023, were included. We used the Mixed Methods Appraisal Tool to assess the quality of the included studies. The narrative synthesis and reporting of findings were guided by the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews). Results: Of the 3143 papers screened, 42 (1.34%) were included in this review. The included studies mainly used qualitative methods and were predominantly published after 2016 in the United States. The included studies were conducted in different settings (inpatient and outpatient) and clinical areas (somatic, mental health, and other). In total, 8 studies analyzed clinical notes, while the remaining studies focused on the experiences of patients, HCPs, and other stakeholders with ORA. Objectively, a decrease in complexity, an increase in readability, and a change in the emotional tone of the clinical notes were observed. The length of the clinical notes was observed to change both objectively and subjectively, although the direction of this change was inconclusive. However, many HCPs also reported writing notes that were less open and more restrictive to protect sensitive or hypothetical information. While for some HCPs the implementation of ORA made the clinical notes a less efficient and valuable working tool, others perceived that ORA opened up new therapeutic opportunities through direct contact with patients. Conclusions: The question of whether an inherently uniform clinical note can meet the diverse needs of different health care stakeholders remains unresolved, highlighting the challenges of standardizing practices in this complex sector. While ORA may encourage HCPs to make their clinical notes more patient friendly, it may also compromise the integrity of documentation by omitting sensitive findings and expert judgment, which can put patients at risk and lead to errors that increase the risk of malpractice. Given the limitations of digital documentation in fostering trust, it is imperative to prioritize meaningful patient-HCP interactions. The use of compensatory measures, such as parallel documentation and restricted access to clinical notes, indicates systemic problems and suggests that current practices are suboptimal. International Registered Report Identifier (IRRID): RR2-10.2196/46722

Psychiatric advance directives (PAD), also known as advance statements or advance choice documents, are legal documents that enable people with mental health conditions to specify their treatment preferences in advance for possible future crises. Subtypes of PADs include crisis cards, joint crisis plans, and self-binding directives (also known as Ulysses contracts). These instruments are intended to improve service user involvement and need orientation in the care of mental crises and to avoid traumatization through unwanted treatment. The existing evidence suggests that people who complete a PAD tend to work more cooperatively with their clinician and experience fewer involuntary hospital admissions. Nevertheless, PADs have not been successfully mainstreamed into care due to multiple barriers to the implementation of PADs, mainly around the completion of PADs and their accessibility and use in crises. The reasons for this include the lack of support in the completion process and acceptance problems, especially on the part of professionals. The research to date primarily recommends support for service users from facilitators, such as peer support workers, and training for all stakeholders. In this article, we argue that while these approaches can help to solve completion and acceptance challenges, they are not sufficient to ensure access to PADs in crises. To ensure accessibility, we propose digital PADs, which offer considerable potential for overcoming these aforementioned barriers. Embedded in national health data infrastructures, PADs could be completed and accessed by service users themselves, possibly with the support of facilitators, and retrieved by any clinic in an emergency. We highlight the strengths and limitations of digital PADs and point out that the proposed solutions must be developed collaboratively and take into account digital inequalities to be effective support for people with serious mental health conditions.

Despite the widespread historical and contemporary use of placebos in medicine, legal regulations addressing their administration remain limited in many countries. This paper examines the legal landscape of clinical placebo use, focusing on key jurisdictions such as France, Germany, Switzerland, the United Kingdom, and the United States. Given the ethical and legal complexities surrounding placebo use, a critical assessment of existing regulatory frameworks is essential. This study employs a multidisciplinary approach, analyzing both binding laws ("hard laws") and non-binding principles ("soft laws") related to placebo administration. Data were collected from legal statutes, health institution guidelines, and professional medical codes to map the regulatory environment governing placebos in different legal systems. The results indicate significant variations in how placebos are addressed legally. For instance in Germany and the UK, no specific laws regulate placebo use, but statutes on informed consent implicitly cover their administration. In the United States, the American Medical Association provides ethical guidelines permitting placebo use under strict conditions emphasizing patient welfare and transparency. Across all examined jurisdictions, unauthorized placebo use may lead to legal consequences such as medical fraud allegations or violations of patient rights. These findings highlight the need for explicit regulatory guidelines to ensure that placebo use adheres to ethical and legal standards. The growing acceptance of open-label placebos (OLPs), which demonstrate efficacy without deception, presents a potential avenue for aligning legal frameworks with evolving medical practices. Future regulatory developments should address the ethical and legal challenges associated with placebos, ensuring patient autonomy and informed consent remain central to their use in clinical practice.

Background:

With the increasing implementation of patient online record access (ORA), various approaches to access to minors’ electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child’s care and involve them in their care. However, the perspectives of adolescents with serious health issues and their parents have not been studied.

Objective:

This study aims to qualitatively and quantitatively investigate the perceived benefits and risks of ORA and the awareness of and views on ORA regulations among adolescents with serious health issues and their parents in Sweden.

Methods:

We used a convergent mixed methods (qualitative and quantitative) design, consisting of a survey and semistructured individual interviews with adolescents with serious health issues (aged 13-18 y) and their parents. Participants were recruited via social media and in clinics. Quantitative data were presented descriptively. Interviews were audio recorded, transcribed, and analyzed using inductive thematic content analysis.

Results:

The survey population included 88 individuals (adolescents: n=31, 35%; parents: n=57, 65%). Interviews were completed by 8 (26%) of the 31 adolescents and 17 (30%) of the 57 parents. The mean age of the surveyed adolescents was 16 (SD 1.458) years, and most of the parents (29/57, 51%) were aged 45 to 54 years. The surveys indicated that most of the parents (51/56, 91%) were critical of the access gap, and most of the adolescents (20/31, 65%) were unaware of the age at which they could gain access. In the interviews, adolescents and parents identified benefits related to ORA that were categorized into 6 themes (empowering adolescents, improved emotional state, enhanced documentation accuracy, improved partnership and communication, supported parental care management, and better prepared for appointments) and risks related to ORA that were categorized into 4 themes (emotional distress and confusion, threatened confidentiality, increased burden, and low usability). Adolescents’ and parents’ views on ORA regulations were categorized into 3 themes (challenges of the access gap, balancing respect for autonomy and support, and suggested regulatory change).

Conclusions:

In Sweden, ORA regulations and a lack of available information cause significant inconvenience for adolescents with serious health issues and their parents. Views on access age limits differed, with adolescents expressing their perceived need for independent access, while parents exhibited concerns about adolescents having ORA. The findings indicated the importance of increased education, dialogue, and flexibility to uphold confidential and consistent delivery of adolescent health care. Further exploration is needed to understand the experiences of adolescents and parents in diverse clinical and geographic contexts, as well as the perspectives of pediatric health care professionals on restrictive ORA regulations.

Introduction In countries with access to the electronic health record (EHR), both patients and healthcare professionals have reported finding errors in the EHR, so-called EHRrors. These can range from simple typos to more serious cases of missing or incorrect health information. Despite their potential detrimental effect, the evidence on EHRrors has not been systematically analysed. It is unknown how common EHRrors are or how they impact patients and healthcare professionals.Methods and analysis A mixed systematic review will be carried out to address the research gap. We will search PubMed, Web of Science and CINAHL for studies published since 2000, which report original research data on patient-identified and healthcare professional-identified EHRrors. We will analyse (1) the prevalence of EHRrors, (2) the types of EHRrors and (3) their impact on care. Quantitative and qualitative findings will be synthesised following the Joanna Briggs Institute Framework for Mixed Systematic Reviews. Identified studies will be critically appraised for meta-biases and risk of bias in individual studies. The confidence in the emerging evidence will be further assessed through the Grading of Recommendations Assessment, Development and Evaluation approach. Findings will be contextualised and interpreted involving an international team of patient representatives and practising healthcare professionals.Ethics and dissemination The study will not involve collection or analysis of individual patient data; thus, ethical approval is not required. Results will be published in a peer-reviewed publication and further disseminated through scientific events and educational materials.PROSPERO registration number CRD42024622849.

Online record access (ORA) can engage adolescents in their care and support parents in managing children's care. However, healthcare professionals (HCPs) worry about maintaining confidentiality when documenting in minors' electronic health records (EHR). This study explored Swedish pediatric oncology HCPs' experiences of protecting minors' confidentiality in the context of ORA. Semi-structured interviews (N=13) were conducted as part of a study on oncology HCPs' views on ORA regulations. Four themes emerged: experiences unrelated to oncology, insufficient options for blocking and concealment, difficulties in documenting child maltreatment, and adapted safeguarding strategies. In conclusion, HCPs need guidance and resources to prevent safety risks without compromising note quality and care of minor patients in vulnerable contexts.