UNASSIGNED: The ethics surrounding the use and sharing of photographs on social media has come under the spotlight as the Protection of Personal Information Act (POPI Act) has come into play.
UNASSIGNED: The aim is to determine the use, ethical practice and sharing of dental photography on social media among qualified and undergraduate oral health practitioners at a dental school in South Africa.
UNASSIGNED: A cross-sectional study design was used on staff and students at the University of the Western Cape\'s Dental Faculty in 2022. Chi-squared and Fisher\'s exact tests were used to determine associations between the different graduation statuses and various demographic factors.
UNASSIGNED: From the 80 undergraduate students and 46 qualified oral healthcare practitioners, the majority were aware that photography could be used in dentistry, and 87.3% (n = 110) took photographs of the dental treatments performed on their patients. Only 60.3% of the participants attended an ethical course that addressed issues with social media and digital photography. Almost 80% (n = 100) of the participants did not feel that they needed to mention all the social media platforms that they would use with their patients\' photographs before sharing.
UNASSIGNED: Dental photography is being used and sometimes shared on social media platforms by some students and staff at university level. Not all participants have attended an ethical course on clinical photography. Dental training needs to include an ethical course on dental photography and the use of sharing photographs on social media.
UNASSIGNED: Good ethical practice regarding clinical photographs in all undergraduate and postgraduate curriculums, to eliminate any uncertainty.

BACKGROUND: This paper explores the feasibility of establishing a large-scale population-based cohort and biobank in Switzerland by assessing potential participants\' needs, expectations, and concerns about such an infrastructure providing information on health, lifestyle, and exposure trajectories, the development of disease, and risk factors over time.
METHODS: We utilized a scenario-based questionnaire in the Swiss Health Study pilot phase (2020-2021), involving 1349 adults aged 20-69 from the cantons Vaud and Bern. We conducted descriptive statistics supported by R and qualitative content analysis of n = 374 open responses related to attitudes towards research.
RESULTS: We highlight the benefits and challenges of the scenario-based approach, discuss the sample represented in the pilot phase, and present implications for building a full cohort. We also report on participants\' attitudes towards and previous experience with health research. We analyze references regarding informed consent and feedback, attitudes towards the Swiss Health Study, and recommendations on improving its scope, design, and instruments. Results indicate a high interest (90%) in participating in a national health study, with 85% of a random population sample willing to join a long-term cohort. Only 43% were familiar with biobanks, and 44% preferred general consent. Trust was high for Swiss-based public research but lower for researchers from other countries or private sector. Over 95% expressed willingness to complete online questionnaires, undergo physical examination, and donate biosamples. Almost all participants wanted to know the outcomes of the medical tests (99.5%) and the exposure to environmental stressors (95%) from their study center visit. Preferred tools for monitoring sleep, physical activity, and diet were known smartphone apps with automatic data management.
CONCLUSIONS: Overall, the study reveals a positive attitude towards personalized health research, with a strong willingness to share data and samples. Key insights focus the meaning of informed consent for participation, the relevance of sampling and representativeness, as well as the significance and challenges of personalized feedback, especially regarding environmental health concerns. Findings emphasize participants\' supportive yet reflexive stances, underscoring the importance of aligning research values with individual values in personalized health research. These insights contribute valuable considerations for refining the scope, design, and instruments of future cohort studies.

UNASSIGNED: In recent times, clinical negligence claims against National Health Service hospitals have doubled, with 8% of claims being made due to \"failure to warn/informed consent.\" This study aimed to assess the current compliance of the neurosurgical division within a large tertiary neuroscience center with the national legal framework and professional guidelines around the issue of surgical consent and to develop strategies to improve the consent process.
UNASSIGNED: Electronic patient records (EPR) were accessed to collect demographic data and information regarding the surgical procedures. Telephone questionnaires were carried out. Neurosurgical registrars were interviewed. The author met with the trust\'s Legal team, the neuropsychology lead, and the trust\'s consent lead.
UNASSIGNED: Fifty-eight patients were included in the analysis. Of the respondents to the questionnaire, 98% felt that they were adequately informed during the consent process. When consenting patients, all registrars felt that they explained the reason for the procedure, detailed benefits, and major risks, including uncommon and rare risks. However, 50% admitted to not specifically discussing the postoperative recovery time or alternatives. Only 15% admitted to documenting on the EPR or through a letter to the patient\'s General Practitioner.
UNASSIGNED: Informed consent is a delicate moment of communication between a clinician and the patient. Regular training and good communication skills help staff to focus on the most relevant aspects of consent, which should be delivered in an appropriate environment and with family support. Audio-visual aids can support the process but do not replace good communication.

BACKGROUND: Electronic informed consent (eConsent) usage has expanded in recent years in Europe, especially during the pandemic. Slow recruitment rate and limitations in participant outreach are the challenges often faced in clinical research. Given the benefits of eConsent and group counselling reported in the literature, group eConsent was implemented in recruitment for the SWITCH-ON study. We aim to explore the experience of participants who attended group eConsent for the SWITCH-ON study and evaluate its potential for future use.
METHODS: SWITCH-ON study aims to analyse the immunogenicity of a healthy population following bivalent COVID-19 booster vaccination. Four hundred thirty-four healthcare workers aged 18-65 were successfully recruited and sent a questionnaire about their experience with group eConsent. Out of 399 completed questionnaires (response rate 92%), 39 participants did not join group eConsent. The remaining 360 responses were included in the final analysis. Quantitative and qualitative data were reported using descriptive statistical analysis and thematic analysis respectively.
RESULTS: Participants found that group eConsent was an efficient method that it allowed them to hear each other\'s questions and concerns and created a sense of togetherness. However, limited privacy, barriers to asking questions in a group, and peer pressure can limit the use of group eConsent. One hundred sixty-five (46%) participants thought that group eConsent was suitable to recruit participants with diseases or conditions, while 87 (24%) reported limitations with this method. The remaining participants suggested that applicability of group eConsent depended on the diseases or conditions of the study population, and one-to-one conversation should always be available. Participants who had experienced both one-to-one and group eConsent shared different preferred consent formats for future studies.
CONCLUSIONS: Group eConsent was positively evaluated by the participants of a low-risk vaccination study. Participants advised using webinars to provide general information about the study, followed by an individual session for each participant, would retain the benefits of group eConsent and minimise the limitations it posed. This proposed setting addresses privacy questions and makes group eConsent easier to implement.
BACKGROUND: ClinicalTrials.gov NCT05471440 (registered on 22nd of July, 2022).

Introduction: Before and after photographs (BAPs) in breast surgery have been identified as important components of the informed consent process. Currently, there is limited consensus on the contents and presentation of BAPs. This study collected the opinions of prior and prospective patients on this topic. Methods: A survey, based on criteria identified by our previous nominal group technique (NGT) study, was designed to obtain patient perspectives on BAPs in breast surgery. Amazon Mechanical Turk, a validated crowd-sourcing tool, was used to identify and survey a group of 72 participants who indicated that they had undergone or were planning to undergo breast surgery. Likert items were analyzed using either chi-squared or Fisher\'s exact test. Results: Most respondents were cis-gendered-women (89%), Caucasian (83%), and between 31 and 41 years old (38%). Respondents agreed that BAPs are important to the consent process, for enabling patient-centered care, and should be presented in standardized sets. BAPs should be more accessible through different platforms, display multiple time points to show the healing process, and have multiple views including close-ups of scars. Photos should be unaltered except for de-identification, and have more diversity with regard to patient gender, age, skin color, and body mass index. These results align with results from our NGT study. Conclusion: Through this study we have identified many criteria that BAPs should meet according to prior and prospective breast surgery patients. Surgeons should think critically about how they present BAPs during the consent process to ensure effective patient-centered care.
Introduction : En chirurgie mammaire, les photos avant-après (PAP) font partie des aspects importants du processus de consentement éclairé. À l’heure actuelle, le consensus sur le contenu et la présentation des PAP est limité. La présente étude visait à recueillir l’avis de patientes passées et prospectives sur le sujet. Méthodologie : Les chercheurs ont préparé un sondage reposant sur les critères qu’ils avaient établis lors de leur étude antérieure sur la technique du groupe nominal (TGN) pour obtenir les points de vue des patients sur les PAP en chirurgie mammaire. Ils ont utilisé l’outil de production participative validé MechanicalTurk d’Amazon pour repérer et sonder un groupe de 72 participants qui ont indiqué avoir subi ou planifié de subir une chirurgie mammaire. Ils ont analysé les énoncés de l’échelle de Likert au moyen du test du chi carré ou de la méthode exacte de Fisher. Résultats : La plupart des répondants étaient des femme cisgenres (89%), blanches (83%), âgées de 31 à 41 ans (38%). Ces répondants ont convenu que les PAP constituent un aspect important du processus de consentement, qu’elles favorisent des soins axés sur les patients et qu’elles doivent être présentées sous forme d’ensembles standardisés. Les PAP devraient être plus accessibles sur diverses plateformes, présenter divers moments du processus de guérison et de multiples points de vue, y compris des gros plans des cicatrices. Les photos devraient être inaltérées, à part pour la désidentification, et refléter une plus grande diversité de genres, d’âges, de couleurs de peau et d’indices de masse corporelle. Ces résultats concordent avec ceux de l’étude antérieure par la TGN. Conclusion : Grâce à la présente étude, les chercheurs ont relevé de nombreux critères que doivent respecter les PAP selon les patients passés et prospectifs en chirurgie mammaire. Les chirurgiens devraient recourir à la réflexion critique quant à la manière de présenter les PAP pendant le processus de consentement pour s’assurer de prodiguer des soins efficaces axés sur les patients.

Pediatric spine surgery is a high complexity procedure that can carry risks ranging from pain to neurological damage, and even death. This comprehensive mini review explores current best practice obtaining valid and meaningful informed consent (IC) prior to pediatric spinal surgery, including modalities that support effective comprehension and understanding. An evaluation of the literature was performed to explore understanding of surgical IC by patients or their guardians and the role of multimedia tools as a possible facilitator. The evidence discussed throughout this review, based on legal and ethical perspectives, reveals challenges faced by patients and guardians in achieving comprehension and understanding, especially when facing stressful medical situations. In this context, the introduction of multimedia tools emerges as a patient-centered strategy to help improve comprehension and decrease pre-operative uncertainty. This review highlights the need for a tailored approach in obtaining IC for pediatric patients and suggests a potential role of shared decision-making (SDM) in the surgical discussion process.

This research identifies the circumstances in which Human Research Ethics Committees (HRECs) are trusted by Australians to approve the use of genomic data - without express consent - and considers the impact of genomic data sharing settings, and respondent attributes, on public trust. Survey results (N = 3013) show some circumstances are more conducive to public trust than others, with waivers endorsed when future research is beneficial and when privacy is protected, but receiving less support in other instances. Still, results imply attitudes are influenced by more than these specific circumstances, with different data sharing settings, and participant attributes, affecting views. Ultimately, this research raises questions and concerns in relation to the criteria HRECs use when authorising waivers of consent in Australia.

BACKGROUND: This study aims to investigate the integration of modern sources of patient information, such as videos, internet-based resources, and scientific abstracts, into the traditional patient informed consent process in outpatient elective surgeries. The goal is to optimize the informed consent experience, enhance patient satisfaction, and promote shared decision making (SDM) between patients and surgeons. By exploring different patient informed consent formats and their impact on patient satisfaction, this research seeks to improve healthcare practices and ultimately enhance patient outcomes. The findings of this study will contribute to the ongoing efforts to improve the informed consent process in public hospitals and advance patient-centred care.
METHODS: Data collection occurred at the day care clinic of a prominent German public hospital, forming an integral component of a prospective clinical investigation. The study exclusively focused on individuals who had undergone surgical intervention for skin cancer. For the purpose of meticulous data examination, the statistical software SPSS version 21 was harnessed. In the course of this study, a chi-square test was aptly employed. Its purpose was to scrutinize the nuances in patient experiences pertaining to informed consent across four distinct categories, viz., oral informed consent discussion (Oral ICD), written informed consent discussion (Written ICD), video-assisted informed consent discussion (video-assisted ICD), and digitally assisted informed consent discussion (digital-assisted ICD). The primary dataset of this inquiry was diligently gathered via a structured questionnaire administered to a targeted cohort of 160 patients. Within this sample, a balanced representation of genders was observed, encompassing 82 males and 78 females. Their collective age span ranged from 18 to 92 years, with an average age of 71 years. A randomized selection methodology was employed to include participants in this study during the period spanning from July 2017 to August 2018.
RESULTS: Significant differences were observed across the groups for all research questions, highlighting variations in patient responses. Video-assisted and digital-assisted IC were rated as superior in patient satisfaction with information compared to written and oral IC. Demographic profiles of the four study groups were found to be comparable.
CONCLUSIONS: The findings of this study indicate that the incorporation of digital technologies in the informed consent process can enhance patient understanding during outpatient elective skin cancer surgeries. These results have important implications for increasing patient satisfaction and improving the SDM process within the hospital environment.

OBJECTIVE: We attempted to conduct a randomized controlled trial of three different informed consent training formats to evaluate their effectiveness. We recruited 503 clinical research professionals, who received $50 for participation. Incidental findings showed unexpectedly low rates of compliance with completing the study training protocols, resulting in insufficient statistical power to test our original hypotheses. In this report, we conducted a secondary analysis of the data in which we characterize and evaluate the observed low compliance. This involved using literature on average reading times, speed-reading times, and video play speeds to calculate the timeframes required to complete the three training formats.
RESULTS: Only 13% of participants completed the training in a reasonable timeframe. Furthermore, only 46% of participants completed the training in the minimum possible timeframe. These findings lead us to ask whether online research training is effective, since no training can be effective if participants do not actually complete the training. Given extensive requirements for educational training among clinical research professionals, we feel the burden of proof is on training programs to demonstrate that they have positive effects.

This paper discusses the importance of return of clinical trial data to patients in the context of the FACILITATE project that aims to develop a participant-centric approach for the systematic return of individual clinical trial data. It reflects on the need for an ethical framework to support the return of clinical trial data. The discussion revolves around the developing FACILITATE ethical framework, specifically focusing on the ethical principles that form the foundation of the framework and guidance on how to implement those principles into practice.