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As the use of Artificial Intelligence (AI) technologies in healthcare is expanding, patients in the European Union (EU) are increasingly subjected to automated medical decision-making. This development poses challenges to the protection of patients' rights. A specific patients' right not to be subject to automated medical decision-making is not considered part of the traditional portfolio of patients' rights. The EU AI Act also does not contain such a right. The General Data Protection Regulation (GDPR) does, however, provide for the right 'not to be subject to a decision based solely on automated processing' in Article 22. At the same time, this provision has been severely critiqued in legal scholarship because of its lack of practical effectiveness. However, in December 2023, the Court of Justice of the EU first provided an interpretation of this right in C-634/21 (SCHUFA)—although in the context of credit scoring. Against this background, this article provides a critical analysis of the application of Article 22 GDPR to the medical context. The objective is to evaluate whether Article 22 GDPR may provide patients with the right to refuse automated medical decision-making. It proposes a health-conformant reading to strengthen patients' rights in the EU. [ABSTRACT FROM AUTHOR]

Medical assistance in dying (MAiD) was legalised federally in Canada after the Supreme Court decision in Carter v Canada (Attorney General) [2015] 1 SCR 331. The federal legislative framework for MAiD was established via Bill C-14 in 2016. Caregivers and patients were central to Carter and subsequent litigation and advocacy, which resulted in amendments to the law via Bill C-7 in 2021. Research has primarily focused on the impacts of regulation on caregivers and patients. This qualitative study investigates how caregivers and patients influence law reform and the operation of MAiD practice in Canada (ie, behave as 'regulatory actors'), using Black's definition of regulation. We found that caregivers and patients performed sustained, focused, and intentional actions that influenced law reform and the operation of MAiD in practice. Caregivers and patients are not passive objects of Canadian MAiD regulation, and their role in influencing regulation (eg, law reform and MAiD practice) should be supported where this is desired by the person. However, recognising the burdens of engaging in regulatory action to address barriers to accessing MAiD or to quality care, and MAiD system gaps, other regulatory actors (eg, governments) should minimise this burden, particularly where a person engages in regulatory action reluctantly. [ABSTRACT FROM AUTHOR]

The use of mobile-based personal health record (m-PHR) applications at the hospital level has been minimally studied. This study aimed to investigate the relationship between m-PHR use and quality of care. A cross-sectional study design was employed, analyzing data from 99 hospitals. Two data sources were utilized: a previous m-PHR investigation conducted from 26 May to 30 June 2022 and a hospital evaluation dataset on quality of care. The use of m-PHR applications was measured by the number of m-PHR application downloads. Three independent variables were assessed: quality of care in the use of antibiotic drugs, injection drugs, and polypharmacy with ≥6 drugs. A generalized linear model was used for the analysis. The hospitals providing high-quality care, as evaluated based on the rate of antibiotic prescription (relative risk [RR], 3.328; 95% confidence interval [CI], 1.840 to 6.020; p < 0.001) and polypharmacy (RR, 2.092; 95% CI, 1.027 to 4.261; p = 0.042), showed an increased number of m-PHR downloads. Among the hospital covariates, public foundation status and being part of multi-hospital systems were associated with the number of m-PHR downloads (p < 0.05). This exploratory study found a positive relationship between quality of care and m-PHR use. Hospitals providing high-quality care may also excel in various activities, including m-PHR application use. [ABSTRACT FROM AUTHOR]

OBJECTIVE: We examined how parents experience and navigate open access to clinical notes ("open notes") in their child's electronic health record and explored their interactions with clinicians during an ICU admission. METHODS: We performed a qualitative analysis using semistructured interviews of English-speaking parents who accessed their child's clinical notes during a pediatric ICU (general or cardiac) admission. We included patient-parent dyads with an ICU admission ≥48 hours between April 2021 and December 2022, note access by proxy timestamp during the ICU course, and either patient age <12 years or incapacitated adolescent ages 12 to 21 years. Purposive sampling was based on sociodemographic and clinical characteristics. Phone interviews were audio-recorded, transcribed, and analyzed using inductive thematic codebook analysis. RESULTS: We interviewed 20 parents and identified 2 thematic categories, outcomes and interactions, in parents accessing clinical notes. Themes of outcomes included applied benefits, psychosocial and emotional value, and negative consequences. Themes of interactions included practical limitations and parental approach and appraisal. The ICU context and power dynamics were a meta-theme, influencing multiple themes. All parents reported positive qualities of note access despite negative consequences related to content, language, burdens, and lack of support. Parents suggested practice and design improvements surrounding open note access. CONCLUSIONS: Parental experiences with open notes reveal new, unaddressed considerations for documentation access, practices, and purpose. Parents leverage open notes by negotiating between the power dynamics in the ICU and the uncertain boundaries of their role and authority in the electronic health record. [ABSTRACT FROM AUTHOR]

Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations. Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience. [ABSTRACT FROM AUTHOR]

Access to radiology reports and images through a patient portal offers several advantages. The purpose of this study was to characterize patient's interactions with their radiology results. This was a retrospective study that evaluated radiography, ultrasound, computed tomography, magnetic resonance imaging, and positron emission tomography, exams performed between July 2020 and June 2021 for patients aged 12 and older. Exam information, access logs of radiology reports and images, and patient demographics were obtained from the electronic health record and image viewing software. Descriptive statistics were computed. The study included 1,685,239 exams. A total of 54.1% of reports were viewed. MRI and PET reports were viewed with the greatest frequency (70.2% and 67.6%, respectively); 25.5% of exam images were viewed, with the greatest frequency for MRI (40.1%). Exams were shared a total of 17,095 times and downloaded 8409 times; 64% of reports were viewed for patients aged 18–39 and 34% for patients aged 80 and greater. The rate of reports viewed was greater for patients with English as their preferred language (57.1%) compared to other languages (33.3%). Among those viewed, 56.5% of reports and 48.2% of images were viewed multiple times; 72.8% of images were viewed on smartphones, 25.8% on desktop computers, and 1.4% on tablets. Patients utilize a portal to view reports and view and share images. Continued efforts are warranted to promote the use of portals and create patient-friendly imaging results to help empower patients. [ABSTRACT FROM AUTHOR]

This study aimed at predicting the use of online medical record functionalities in later life. Frequency of accessing the record and the encouragement to use it by healthcare provider served as the main predictors. The study's theoretical framework was comprised of the facilitating conditions and the technology familiarity approaches. The data were obtained from the Health Information National Trends Survey and analyzed using logistic regression models. The sample included Internet users aged 60 years or older who accessed their online medical records at least once during the year prior to the survey (N = 623). The results show an interaction between access frequency and use encouragement concerning the use of online medical record for looking up test results and securely messaging healthcare providers. In both cases, the effect of the use encouragement was more pronounced in frequent than in non-frequent users. Access frequency and use encouragement were each positively associated with using online medical record for downloading personal health information. The results suggest that both studied factors are important for understanding online medical record use in older adulthood, therefore supporting each theoretical approach employed. In addition, the results underscore a differential role the use encouragement plays for older frequent and non-frequent online medical record users. [ABSTRACT FROM AUTHOR]

Many mechanisms have been tried to protect patients from the effects of undisclosed payments to physicians so that patients can make informed decisions about whether their physician’s recommendations are tainted because of the physician’s conflict of interest. Over the past decade, those efforts have been dominated by the Physician Payments Sunshine Act (“Sunshine Act”). A decade ago, the Sunshine Act took effect with the aim of increasing transparency of financial relationships between health care providers and manufacturers of pharmaceuticals and medical devices. Yet a decade and more than a billion dollars in effort later, the highly touted Act is a failure when it comes to its primary goal: educating patients about when their doctors have a financial conflict of interest. After a decade of the Sunshine Act and new DOJ enforcement actions to promote compliance, few patients access the government database or are even aware of its existence. This Article examines the Sunshine Act and ties it deficiencies to its failure to focus on the trust inherent to the doctor-patient relationship. This analysis of the Sunshine Act’s impact ten years after its passage reveals its structure is ill-suited to achieve its noble aspirations. Further, while its goals are consistent with schola surrounding fiduciary relationships and informed consent, its current structure is not. This analysis comes at a key moment. The Sunshine Act represented a second wave of regulation to address physician conflicts, following (and partially preempting) a series of state laws aimed at transparency. State dissatisfaction with the Sunshine Act has now prompted a third wave, as states begin to enact new regulations aimed at succeeding where the Sunshine Act has failed. These state efforts unfortunately suffer from some of the same limitations as the Sunshine Act. Recent federal prosecutions of dozens of doctors under the Act, however, provide a roadmap for a patient-centered way to achieve the Sunshine Act’s goal to inform patients of physician conflicts. This Article analyzes these recent prosecutions and, for the first time, applies them to the existing scholarly debate surrounding the existence of fiduciary duties and the scope of informed consent. This Article concludes the Sunshine Act is spreading “sunshine” in the wrong direction. The Act puts manufacturers and the government in the middle of the physician-patient relationship by requiring disclosure by manufacturers to the government and tasking the government with informing patients through its website. Instead of this scheme, the government should return to its more effective role as enforcer by requiring physicians to disclose to their patients directly. By addressing conflicts of interest where care is delivered, this patient-centered framework has the potential to achieve the currently unrealized goals of the Sunshine Act, finally bringing patients into the light. [ABSTRACT FROM AUTHOR]

Background: Hemodialysis holds the highest incidence and prevalence rate in Taiwan globally. However, the implementation of advance care planning (ACP), advance directives (AD), and patient self-determination acts (PSDA) remains limited. Our objective was to examine the current status of ACP, AD and PSDA and potential opportunities for enhancement. Methods: We developed a novel questionnaire to assess individuals' knowledge, attitudes, and intentions regarding ACP, AD, and PSDA. We also collected baseline characteristics and additional inquiries for correlation analysis to identify potential factors. Student's t-test and Analysis of Variance were employed to assess significance. Results: Initially, a cohort of 241 patients was initially considered for inclusion in this study. Subsequently, 135 patients agreed to participate in the questionnaire study, resulting in 129 valid questionnaires. Among these respondents, 76 were male (59.9%), and 53 were female (41.1%). Only 13.2% had signed AD. A significant portion (85.3%) indicated that they had not discussed their dialysis prognosis with healthcare providers. Additionally, a mere 14% engaged in conversations about life-threatening decisions. Ninety percent believed that healthcare providers had not furnished information about ACP, and only 30% had discussed such choices with their families. The findings revealed that the average standardized score for ACP and AD goals was 84.97, while the attitude towards PSDA received a standardized score of 69.94. The intention score stood at 69.52 in standardized terms. Potential candidates for ACP initiation included individuals aged 50 to 64, possessing at least a college education, being unmarried, and having no history of diabetes. Conclusion: Patients undergoing hemodialysis exhibited a significant knowledge gap concerning ACP, AD, and the PSDA. Notably, a substantial number of dialytic patients had not received adequate information on these subjects. Nevertheless, they displayed a positive attitude, and a considerable proportion expressed a willingness to sign AD. It is imperative for nephrologists to take an active role in initiating ACP discussions with patients from the very beginning. [ABSTRACT FROM AUTHOR]

Background: The hospital-to-home transition remains a high-risk care interval for older adults. Skilled home health (HH) agencies are uniquely positioned to address care-transitions-associated patient safety threats. We previously developed the Hospital-to-Home-Health Transition Quality (H3TQ) Index to identify safety issues after hospital discharge. Our objective is to evaluate a participatory ergonomics process engaging stakeholders to develop strategies to implement the H3TQ into HH agency workflow to improve transition-associated safety issues in real-time. Methods: Stakeholders participated in three, two-hour Intervention Refinement Team (IRT) meetings with a focus on: (1) identifying facilitators and barriers to collect H3TQ data in real-time, (2) integration of H3TQ into workflows, and (3) sharing H3TQ safety threat information to improve care transition safety outcomes. We used the human factors engineering-informed Systems Ambiguity Framework to guide the structure of IRT meetings and qualitative data analysis to evaluate the IRT process itself. Results: Stakeholders (N = 9) represented patients, family caregivers, and HH staff. Stakeholders identified three key strategies for H3TQ implementation: (1) mechanism and timing of H3TQ data collection using multiple platforms; (2) data sharing conditions for safety reporting across the health system; and (3) identification of targeted care transitions outcomes for improvement. Participants highly rated IRT meetings regarding meeting usefulness, comfort, and degree of input into the discussion. Conclusions: The IRT participatory ergonomics process was successful. Stakeholders identified strategies to facilitate implementation of the H3TQ implementation to improve the hospital-to-HH. IRTs have potential application to other health system issues related to the care of people with complex needs. [ABSTRACT FROM AUTHOR]

Background/Aim: Women with rheumatic and musculoskeletal disorders often discontinue using their medications prior to conception or during the few early weeks of pregnancy because drug use during pregnancy frequently results in anxiety. Pregnant women have reported seeking out health-related information from a variety of sources, particularly the Internet, in an attempt to ease their concerns about the use of such medications during pregnancy. The objective of this study was to evaluate the accuracy and completeness of health-related information concerning the use of anti-rheumatic medications during pregnancy as provided by Open Artificial Intelligence (AI's) Chat Generative Pre-trained Transformer (ChatGPT) versions 3.5 and 4, which are widely known AI tools. Methods: In this prospective cross-sectional study, the performances of OpenAI's ChatGPT versions 3.5 and 4 were assessed regarding health information concerning anti-rheumatic drugs during pregnancy using the 2016 European Union of Associations for Rheumatology (EULAR) guidelines as a reference. Fourteen queries from the guidelines were entered into both AI models. Responses were evaluated independently and rated by two evaluators using a predefined 6-point Likert-like scale (1 – completely incorrect to 6 – completely correct) and for completeness using a 3-point Likert-like scale (1 – incomplete to 3 – complete). Inter-rater reliability was evaluated using Cohen’s kappa statistic, and the differences in scores across ChatGPT versions were compared using the Mann–Whitney U test. Results: No statistically significant difference between the mean accuracy scores of GPT versions 3.5 and 4 (5 [1.17] versus 5.07 [1.26]; P=0.769), indicating the resulting scores were between nearly all accurate and correct for both models. Additionally, no statistically significant difference in the mean completeness scores of GPT 3.5 and GPT 4 (2.5 [0.51] vs 2.64 [0.49], P=0.541) was found, indicating scores between adequate and comprehensive for both models. Both models had similar total mean accuracy and completeness scores (3.75 [1.55] versus 3.86 [1.57]; P=0.717). In the GPT 3.5 model, hydroxychloroquine and Leflunomide received the highest full scores for both accuracy and completeness, while methotrexate, Sulfasalazine, Cyclophosphamide, Mycophenolate mofetil, and Tofacitinib received the highest total scores in the GPT 4 model. Nevertheless, for both models, one of the 14 drugs was scored as more incorrect than correct. Conclusions: When considering the safety and compatibility of anti-rheumatic medications during pregnancy, both ChatGPT versions 3.5 and 4 demonstrated satisfactory accuracy and completeness. On the other hand, the research revealed that the responses generated by ChatGPT also contained inaccurate information. Despite its good performance, ChatGPT should not be used as a standalone tool to make decisions about taking medications during pregnancy due to this AI tool’s limitations. [ABSTRACT FROM AUTHOR]

Background: Social media is an important tool for networking, recruitment, and promoting clinical practice. No study has specifically assessed which FPRS practitioners have professional social media accounts, how they utilize them, and what barriers or resources exist to their use. Objectives: This study aims to examine differences in social media use based on provider demographics and practice setting, and identify resources and barriers to professional social media use. Methods: This cross-sectional analysis was an anonymous survey sent to AAFPRS members. Data collected included demographics, practice setting, resources, and barriers encountered to use of professional social media. Results: Most facial plastic surgeons (80%) use professional social media, notably Instagram and Facebook, and mostly post patient photos and stories (67.9%). Social media is more commonly utilized in private practice (56% vs 23%, P =.0016), where there are less institutional barriers (10% vs 40%, P =.02) and more resources available (82.5% vs 12.5%, P =.01). Conclusions: Social media is widely used in FPRS. Working in private practice is associated with increased availability of resources for support, and a reduction in institutional barriers to maintaining a social media presence. With this understanding, facial plastic surgeons can be better equipped for networking, marketing, and promoting the field of FPRS. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to identify human rights violations of patients during the early periods of the COVID-19 pandemic in Ghana by investigating the experiences of people on how health-care professionals discharged their responsibilities during the time in question. Design/methodology/approach: Explanatory design of the mixed methods approach was adopted, with the intention of collecting both quantitative and qualitative data sequentially, and then integrating the results at the interpretation stage. The approach enriched the quality of data collected as it offered the advantage of shedding light on the primary motivations and reasons for attitudes and behaviours and helped to provide an in-depth understanding of how individuals interpret the happenings around them and their experiences. Thus, although some amount of quantitative method was used in the data collection, the core of this paper is based on the qualitative interpretations. Findings: The study reveals that health-care professionals, especially those in the Tema Metropolis, undermined certain fundamental human rights of patients during the early period of the COVID-19 pandemic. This includes failure to provide information to patients about treatment options and potential risks of medications; failure to seek the informed consent of patients before performing medical procedures; denial of access to medical files of patients for transfer; and inability or failure to provide medical ambulances services to patients on time. Originality/value: Although many publications on human rights dimensions and health protective issues on COVID-19 pandemic are available on a global scale, still little information pertaining to experiences of individuals with health-care professionals during the early days of the COVID-19 pandemic, especially in Ghana through the lens of patient's rights exists. This paper, therefore, fills an important gap in health-care management information, critical for policy decision-making processes regarding patient's rights in times of pandemic control. [ABSTRACT FROM AUTHOR]

BACKGROUND: After enactment of the 21st Century Cures Act, many health care systems offer adolescents and parents access to electronic health information through online portals. Few studies have evaluated adolescent portal access policies since the implementation of the Cures Act. METHODS: We performed structured interviews with informatics administrators in US hospitals with ≥50 dedicated pediatric beds. We performed thematic analysis of challenges to developing and implementing adolescent portal policies. RESULTS: We interviewed 65 informatics leaders representing 63 pediatric hospitals, 58 health care systems, 29 states, and 14 379 pediatric hospital beds. Most hospitals provided portal access to adolescents (86%) and parents (95%). Filtering of results sent to parental portals ranged widely, with 14% providing unfiltered access, 31% performing minimal filtering for sensitive information, and 43% offering limited access. Portal access policies also varied widely within states. Challenges to developing policies included legislation and compliance issues, tension between confidentiality and usefulness, clinicians' preferences and concerns, limited understanding and investment of institutions in pediatric issues, and limited focus of vendors on pediatric issues. Challenges to implementing policies included technical challenges, educating end-users, potential for parental coercion, harms of bad news, complex enrollment processes, and informatics workforce limitations. CONCLUSIONS: Adolescent portal access policies vary widely across and within states. Informatics administrators identified multiple challenges related to developing and implementing adolescent portal policies. Future efforts should strive to develop intrastate consensus on portal policies and to engage parents and adolescent patients to better understand preferences and needs. [ABSTRACT FROM AUTHOR]

Background: Health records changed over time in the countries, and also Türkiye passed from paper versions to personal health records (PHR) and put patients at the center of the system by allowing them to become the master of their health data. Aims: Presenting the current state of the e-Nabız application nationwide in Turkey, and to evaluate the benefits of patients' online access to electronic health records and the system's interoperability. Study Design: A descriptive observational study Methods: In the Turkish PHR system (e-Nabız), services to patients to manage their health are categorized and analyzed within the scope of national digital health services. In addition, the data validation in the e-Nabız within itself has been systematically expressed. Results: The Turkish PHR system allows users to use 30 different services for treatment, prevention, health promotion, and healthrelated and interrelated areas. Moreover, some statistics regarding the categories specified in the e-Nabız system are included. Today, data is flowing from 28,608 system-integrated health facilities and 39 e-Nabız integrated public institutions. In addition, 4.5 billion transactions are done by people by 2023 and 220 million users are queried by physicians to reach patients' labs and results. Plus, the e-Nabız is adopted by 82% of the Türkiye population. Conclusion: There is no universal model for the content of the PHR. Given its importance to the patient, the content evolved and will continue to grow over the years. With the advent of coronavirus disease 2019, the system is equipped with three new services. The importance of these services over time and in the future has been demonstrated with increasing momentum. [ABSTRACT FROM AUTHOR]

Ensuring the confidentiality and protection of health information is the standard of care for adolescents. In 2023 and beyond, the protection of personal health information is more critical than ever. The 21st Century Cures Act Office of the National Coordinator for Health Information Technology Rule, with its requirements for the broad sharing of electronic health information and ban on "information blocking," poses serious concerns for confidentiality in adolescent health care delivery. The coronavirus disease 2019 pandemic has rapidly increased the use of telehealth and, thereby, patient portal use for adolescent health records, increasing risks for disclosure. Understanding the legal and clinical underpinnings for confidential adolescent health services and the clinical challenges and health information technology limitations presented by the Office of the National Coordinator for Health Information Technology Rule is key to providing quality adolescent health services while implementing the Rule. A framework is presented to facilitate decision-making in individual cases by clinicians. [ABSTRACT FROM AUTHOR]

Purpose: Assess the impact of electronic health record interventions on patient access to post-hospital discharge prescriptions. Methods: Five interventions were implemented in the electronic health record to improve patient access to prescriptions after discharge from hospital: electronic prior authorization, alternative medication suggestions, order sets, mail order pharmacy alerts, and medication interchange instructions. This was a retrospective cohort study of patient responses from discharges during 6 months before the first intervention implementation and 6 months after the last intervention implementation documented in the electronic health record and a transition-in-care platform. Primary endpoint was the proportion of discharges with patient-reported issues that would have been prevented by the studied interventions out of number of discharges with at least one prescription, analyzed using Chi-squared test (level of significance.05). Results: Discharges with patient-reported issues that would have been prevented by the studied interventions decreased from 1.68 to 1.07 out of 1000 discharges with prescriptions (P <.001). Conclusion: Interventions in the electronic health record reduced barriers faced by patients to picking up prescriptions post-discharge from hospital, potentially leading to improved patient satisfaction and improved health outcomes. Important factors to consider for electronic health record intervention implementation are workflow development and intrusiveness of clinical decision support. Multiple targeted electronic health record interventions can improve patients' access to prescriptions after discharge from hospital. [ABSTRACT FROM AUTHOR]

Introduction: Client-accessible interdisciplinary health records potentially contribute to integrated care by facilitating collaboration and enhancing clients’ involvement in care. To achieve this, three Dutch organizations providing ‘care for youth’ developed a fully client-accessible electronic patient record (EPR-Youth). Objective: To evaluate the implementation of EPR-Youth and to determine barriers and facilitators. Methods: A mixed methods design combined system data, process observations, questionnaires and focus group interviews. Target groups were parents, adolescents, professionals using EPR-Youth, and implementation stakeholders. Findings: Client-portal acceptability was high among all clients. Client-portal adoption rate was high and differed between age groups and educational levels. Professionals’ doubts about acceptability, appropriateness and fidelity were partly due to lack of system knowledge. Implementation barriers were the complexity of co-creation, lack of clear leadership, and concerns about legal issues. Facilitators were clarifying vision and legal context, setting deadlines, and a pioneering spirit. Conclusion: The early implementation of EPR-Youth, the first Dutch client-accessible interdisciplinary electronic health record in ‘care for youth’ was successful. To enhance adoption among clients, group-specific barriers for portal-use should be determined. Professionals need additional training. Further research is needed to gain insight into client-portal access barriers. To benefit more from co-creation, an organizational change towards situational leadership is necessary. [ABSTRACT FROM AUTHOR]

Patient rights support patient autonomy and is an important bioethics issue that has been on the healthcare agenda in recent decades. Patients exercising their rights is one of the factors that positively affect the care and treatment process. The aim of this study is to determine the attitudes toward patients exercising their rights, factors affecting it, and to raise awareness on the subject. This cross-sectional descriptive study was conducted with 421 patients hospitalized in a university hospital in Turkey. Data were collected using the Scale of Patient Rights Using Attitude (SPRUA) and 16 questions identifying the demographic characteristics of the participants and information that is thought to affect attitudes toward patient rights. Each statement on the SPRUA, a Likert-type scale, is scored from 5 to 1. The total score that can be obtained from the scale ranges between 29 and 145. The total score on the scale determines the attitude toward using patient rights. The Shaphiro wilk test, Student t test, One Way ANOVA, Tukey multiple comparison tests, Kruskal Wallis and All pairwise tests were used to evaluate the data. Participants' total mean score on the SPRUA was 117.50 ± 22.72. Some socio-demographic variables and experiences during the illness affected the participants' attitudes toward exercising patient rights. There was a significant difference between the participants' the mean SPRUA score and the following factors: age, education level, place of residence, clinic hospitalized in, chronic disease status, knowledge about patient rights, duration of hospitalization. The participants had high mean scores on the scale. [ABSTRACT FROM AUTHOR]

Industry 4.0 has ushered in a new era in the manufacturing industry. Healthcare delivery, like manufacturing, is on the verge of a fundamental shift into the new era of smart and connected health care, termed Health Care 4.0. Sharing healthcare data is an important step in improving the healthcare system's intelligence and service quality. Healthcare data, which is a personal asset of the patient, should be owned and managed by the patient rather than being dispersed among several healthcare systems, preventing data exchange and jeopardizing patient privacy. Electronic Health Records (EHRs) assist individuals by allowing them to combine and manage their medical data. On the other hand, today's EHR systems fall short of providing patients with traceable, trustworthy, and secure ownership over their medical data, creating serious security risks. Furthermore, the most of present EHR techniques and systems are centralized, making it difficult to share medical data and increasing the danger of a single point of failure. Blockchain technology can enable dependable, transparent, and auditable computing in the healthcare industry by utilizing a decentralized network of peers and a public ledger. In this article, we propose Patient-Controlled Blockchain Enabled Electronic Health Records as a way for patients to have safe control over their data that is decentralized, immutable, transparent, traceable, and trustworthy. Decentralized Interplanetary file storage is used in the suggested technique. Two main performance criteria are used to evaluate the suggested solutions: cost and accuracy. [ABSTRACT FROM AUTHOR]

Background: In recent years, there has been an increasing interest in electronic health record (EHR) systems and various approaches of encouraging acceptance. Multiple methods of EHR acceptance have been proposed. However, a systematic review of patient's perspectives of their role and challenges in processing EHR remains lacking. Moreover, so far, there has been little discussion about barriers and facilitators of EHR system acceptance and usage from the patients' perspective. Methods: The study was reported according to the PRISMA statement. Six databases were systematically searched using keywords for articles from 2002–2020. We reviewed these data and used an inductive approach to analyse findings. Results: A total of 36 studies met the inclusion criteria. Our systematic literature review results reveal a wide range of barriers and facilitators assigned to four distinct stages of EHR system usage: awareness, adoption, behaviour and perception, and consequences. Results were described in a narrative synthesis of the included empirical studies. Discussion: Results underline the necessity to put a particular emphasis – but not exclusively – on the initial stage of awareness in the future. Further research in the field is therefore strongly recommended in order to develop tailored mediated communication to foster EHR system usage in the long run. [ABSTRACT FROM AUTHOR]

The article focuses on the challenges and benefits of providing patients with immediate access to their medical records through digital platforms. Topics include the potential confusion and anxiety patients may experience from interpreting complex medical information on their own, the regulatory push for transparency under the 21st Century Cures Act, and the positive impact of real-time access on patient empowerment and self-management in chronic conditions like diabetes and heart failure.

Policy PointsPatients and families can identify clinically relevant errors, including "blindspots"—safety hazards that are difficult for clinicians or organizations to see.Health information transparency, including patient access to electronic visit notes, now federally mandated in the US and the subject of policy debate worldwide, creates a new opportunity to engage patients in diagnostic safety. However, not all patients access notes.Patient identification of blindspots in their notes underscores the need to systematically and equitably engage willing patients in safety, promote patient "good catches," and establish routine systems for patient feedback to help avoid preventable diagnostic errors and delays. Context: Policy shifts toward health information transparency provide a new opportunity for patients to contribute to diagnostic safety. We investigated whether sharing clinical notes with patients can support identification of "diagnostic safety blindspots"—potentially consequential breakdowns in the diagnostic process that may be difficult for clinical staff to observe. Method: We used mixed methods to analyze patient‐reported ambulatory documentation errors among 22,889 patients at three US health care centers who read ≥ 1 visit note(s). We identified blindspots by tailoring a previously established taxonomy. We used multiple regression analysis to identify factors associated with blindspot identification. Findings: 774 patients reported a total of 962 blindspots in 4 categories: (1) diagnostic misalignments (n = 421, 43.8%), including inaccurate symptoms or histories and failures or delay in diagnosis; (2) errors of omission (38.1%) including missed main concerns or next steps, and failure to listen to patients; (3) problems occurring outside visits (14.3%) such as tests, referrals, or appointment access; and (4) multiple low‐level problems (3.7%) cascading into diagnostic breakdowns. Many patients acted on the blindspots they identified, resulting in "good catches" that may prevent potential negative consequences. Older, female, sicker, unemployed or disabled patients, or those who work in health care were more likely to identify a blindspot. Individuals reporting less formal education; those self‐identifying as Black, Asian, other, or multiple races; and participants who deferred decision‐making to providers were less likely to report a blindspot. Conclusion: Patients who read notes have unique insight about potential errors in their medical records that could impact diagnostic reasoning but may not be known to clinicians—underscoring a critical role for patients in diagnostic safety and organizational learning. From a policy standpoint, organizations should encourage patient review of visit notes, build systems to track patient‐reported blindspots, and promote equity in note access and blindspot reporting. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Medical Imaging & Radiation Sciences is the property of Elsevier B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

We examined whether patient portals (online medical records) access and use differed between groups of various races/ethnicities and nativity status. We used data from the nationally representative Health Information National Trends Survey (N=3,191). We used logistic regression to examine associations between nativity status and the following three binary outcomes: (1) being offered access to patient portals by patients' health care providers/insurers, (2) being encouraged to use one by their health care providers, and (3) having used one within the past 12 months. We also investigated whether race/ethnicity moderated the relation between nativity status and these three outcomes. Among Asians, the likelihood of being offered access to a patient portal depended on nativity status. U.S.-born Asians had the highest rate of being offered access to a portal (66%) and foreign-born Asians had the lowest rate (38%). There were no differences as a function of nativity status for other races/ethnic groups. [ABSTRACT FROM AUTHOR]

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This case report shows that there is a lack of a legal framework in Japan to protect patients' right during the end‐of‐life period, which hinders the implementation of ACP in medical practice. This report suggests that legal support can contribute to the advancement of ACP while addressing cultural differences. Advance Care Planning has been widely advocated in Japan, but it has not yet taken root. The collective decision making culture in Japan may unconsciously overpower or ignore the patients' wishes, hence legal support can mitigate its negative impacts on ACP. [ABSTRACT FROM AUTHOR]

Multiple digital health technologies have been evaluated across clinical development programs, including external, wearable, implantable, and ingestible devices and sensors, along with digital mobile health applications (apps) that are accessible via users' personal electronic devices (e.g., smartphones, tablets, and computers). Several of these technologies have been incorporated into our ongoing neurology and respiratory clinical development programs. Based on our experience, one of the greatest potential benefits of digital health technologies is the ability to collect objective and/or biological data continuously or at regular intervals outside of office visits during a patient's normal daily activities to provide additional efficacy and safety information, versus data capture from traditional episodic, time point-based office visits. Many challenges encountered with digital health technologies can be successfully addressed by providing the appropriate training to staff and patients, ensuring availability of appropriate infrastructure support, and conducting pilot studies before scaling up to larger trials. Overall, our experience with digital health technologies demonstrated their potential to increase the amount of objective data collected in clinical trials, expand patient access to trials, and facilitate further improvement of clinical outcomes. [ABSTRACT FROM AUTHOR]

The objective is to determine patients' utilization rate of radiology image viewing through an online patient portal and to understand its impact on radiologists. IRB approval was waived. In this two-part, multi-institutional study, patients' image viewing rate was retrospectively assessed, and radiologists were anonymously surveyed for the impact of patient imaging access on their workflow. Patient access to web-based image viewing via electronic patient portals was enabled at 3 institutions (all had open radiology reports) within the past 5 years. The number of exams viewed online was compared against the total number of viewable imaging studies. An anonymized survey was distributed to radiologists at the 3 institutions, and responses were collected over 2 months. Patients viewed 14.2% of available exams – monthly open rate varied from 7.3 to 41.0%. A total of 254 radiologists responded to the survey (response rate 32.8%); 204 were aware that patients could view images. The majority (155/204; 76.0%) felt no impact on their role as radiologists; 11.8% felt negative and 9.3% positive. The majority (63.8%) were never approached by patients. Of the 86 who were contacted, 46.5% were contacted once or twice, 46.5% 3–4 times a year, and 4.7% 3–4 times a month. Free text comments included support for healthcare transparency (71), concern for patient confusion and anxiety (45), and need for attention to radiology reports and image annotations (15). A small proportion of patients viewed their radiology images. Overall, patients' image viewing had minimal impact on radiologists. Radiologists were seldom contacted by patients. While many radiologists feel supportive, some are concerned about causing patient confusion and suggest minor workflow modifications. [ABSTRACT FROM AUTHOR]

The article focuses on organize the services to avoid legal complications.

The purpose of this paper was to examine organisational change in a hospital setting. Specifically, the paper examines how patients responded to the introduction of personal health records (PHR). This research was an empirical investigation based on surveys completed by 136 patients in the United States. The paper draws on Lewin's Force Field Analysis Model to explain patient responses to new PHR technology. The results indicate that affective and cognitive resistance factors exist, but the presence of change information can mitigate the resistance. While both resistance factors were relevant, the study found that reducing cognitive resistance had a stronger influence than reducing affective resistance. This research will contribute to the health care literature by offering insight into the factors associated with resistance and the continued use of PHR systems. The research also contributes to the individual IT literature by examining attitudes and beliefs that lead to continued use of IT systems. [ABSTRACT FROM AUTHOR]

The article "Latest News in Brief" deals with the ineffectiveness of consent in the absence of information about a change in the surgeon. The Supreme Court (OGH) has ruled that the patient must be informed about the change in the surgeon and must obtain their consent if the treatment contract stipulates that the operation will be performed by a specific surgeon. The OGH's decision is based on the patient's right to self-determination and the violation of the doctor's duty to inform. It is emphasized that the patient's consent to the operation is ineffective if they state that they only want to be operated on by a specific doctor. The article discusses two different cases in which no intentional action or medical errors could be proven. [Extracted from the article]

This paper connects findings from the field of placebo studies with research into patients' interactions with their clinician's visit notes, housed in their electronic health records. We propose specific hypotheses about how features of clinicians' written notes might trigger mechanisms of placebo and nocebo effects to elicit positive or adverse health effects among patients. Bridging placebo studies with (a) survey data assaying patient and clinician experiences with portals and (b) randomized controlled trials provides preliminary support for our hypotheses. We conclude with actionable proposals for testing our understanding of the health effects of access to visit notes. [ABSTRACT FROM AUTHOR]

Aim: To describe healthcare professionals' accessibility and transfer of patients' and family members' end‐of‐life wishes in ACP to the palliative care unit. Design: The study used a qualitative descriptive study design. Methods: Purposive sampling was used. The data (N = 33) were collected through interviews with physicians, registered nurses, practical nurses and social workers. The data were analysed by inductive content analysis. Results: Two main categories emerged. Patients' and family members' end‐of‐life wishes documentation in relation to changing information needs was described in relation to patients' condition and care context. Transfer of patients' and family members' end‐of‐life wishes to palliative care unit included written and verbal communication. Results showed lack of implementation of ACP early, lack of implementation about the holistic interpretation of ACP into medical notes and lack of transferability of ACP into documenting systems impacting on accessibility and realization for the patient and family members at the end‐of‐life. [ABSTRACT FROM AUTHOR]

Rationale, Aims and Objectives: Sharing aspects of the traditional medical record with patients has been successful in primary and antenatal care, but has not been investigated in the UK inpatient setting. Our aim was to evaluate the impact on patient and clinician experience of providing patients with a written lay summary of their care‐plan in the acute care setting. Method: We carried out a qualitative interview study on two acute medicine wards in an NHS University Teaching Hospital for a 4‐week period in 2019. A summary record, designed in response to suggestions from doctors and patients from a previous study, was distributed to patients on the first ward round after admission. Eligible participants included all doctors and nurses working on and all patients and their families attending the acute medical units; patients were excluded if they lacked capacity to consent or were under 18. We interviewed 20 patients, 10 relatives, 10 doctors and 7 nurses. Results: Patients felt that the summary improved their ability to remember details about their care so they could more accurately and easily update their relatives. They did not feel that the summary induced anxiety. Patient‐doctor communication was improved: patients felt empowered to ask more questions and doctors felt that it solidified their plan and encouraged them to avoid medical jargon. Most patients felt the summary included the 'right' amount of information. Healthcare professionals were more concerned about the risk of breaching confidentiality than patients. Doctors felt that providing summaries was time‐consuming; there were differing opinions about whether this was a worthwhile investment of time. Clinicians recognized that the traditional medical record has many roles. Conclusions: A summary record could empower patients and improve patient‐doctor communication but would require additional clinician and administrative time. [ABSTRACT FROM AUTHOR]

People manage many aspects of their lives online through digital devices such as smartphones. However, the ability for people to manage their healthcare digitally has not yet been fully realised. Patient portals are secure online links that offer patients convenient and constant access to their personal health records. Evidence has suggested that patient portals can enhance patients' engagement in their own care and support them to manage any long-term conditions. This article describes the introduction of a patient portal at Cambridge University Hospitals NHS Foundation Trust. The article outlines the process of implementation and discusses the lessons learned, which may be of value to other organisations. [ABSTRACT FROM AUTHOR]

Background: There are few studies examining the usage and utility of patient portals among seriously ill and end-of-life populations and their caregivers. Objective: The aim of this study was to describe portal user characteristics among patients and their caregivers (proxy login) at two time points: (1) the 12 months following an electronic medical record flag for serious illness and (2) during the last 12 months of life. Methods: A retrospective cohort analysis of Kaiser Permanente Colorado (KPCO) patients with serious illness, as defined by Kaiser Permanente's prognostic algorithm, and their proxy caregivers was performed for the two time periods. Use was characterized as (1) the discrete number of days the portal was used and (2) the number of days that portal features were accessed. Differences in use by user characteristics were assessed. Results: Patients flagged for serious illness (N = 6129) were 70.4 ± 14.2 years of age, and used the portal on average 50.4 days. Patients (N = 6517) in the last year of life were 76.7 ± 13.7 years of age and used the portal on average 43 days. Caregiver proxy use of the portal was low in both cohorts. Patients who were older, female, non-White, and healthier were less likely to use the portal. Conclusions: In comparison with overall KPCO portal use and recent patient portal studies examining use patterns, patient portal use was high among patients flagged with serious illness and nearing the end of life. However, because use was associated with age, gender, and race, addressing barriers to portal adoption among underserved populations and caregiver proxies is key to better leveraging patient portal systems for palliative and end-of-life care. [ABSTRACT FROM AUTHOR]

The authors agree with the article "Extending Research Protections to Tribal Communities," by B. Saunkeah and peers, which points out that research ethics principles outlined in Belmont Report do not offer adequate research protections for American Indian/Alaska Native (AI/AN) peoples. Topics include the consideration for respect for sovereignty when recruiting AI/AN peoples, the importance of reconsidering group risks and harms to AI/AN individuals and the concept of reciprocity in research.