Status of MyHealthWay and Suggestions for Widespread Implementation, Emphasizing the Utilization and Practical Use of Personal Medical Data.

OBJECTIVES: In the Fourth Industrial Revolution, there is a focus on managing diverse medical data to improve healthcare and prevent disease. The challenges include tracking detailed medical records across multiple institutions and the necessity of linking domestic public medical entities for efficient data sharing. This study explores MyHealthWay, a Korean healthcare platform designed to facilitate the integration and transfer of medical data from various sources, examining its development, importance, and legal implications. METHODS: To evaluate the management status and utilization of MyHealthWay, we analyzed data types, security, legal issues, domestic versus international issues, and infrastructure. Additionally, we discussed challenges such as resource and infrastructure constraints, regulatory hurdles, and future considerations for data management. RESULTS: The secure sharing of medical information via MyHealthWay can reduce the distance between patients and healthcare facilities, fostering personalized care and self-management of health. However, this approach faces legal challenges, particularly relating to data standardization and access to personal health information. Legal challenges in data standardization and access, particularly for secondary uses such as research, necessitate improved regulations. There is a crucial need for detailed governmental guidelines and clear data ownership standards at institutional levels. CONCLUSIONS: This report highlights the role of Korea's MyHealthWay, which was launched in 2023, in transforming healthcare through systematic data integration. Challenges include data privacy and legal complexities, and there is a need for data standardization and individual empowerment in health data management within a systematic medical big data framework.

Implementation of the electronic health record in the German healthcare system: an assessment of the current status and future development perspectives considering the potentials of health data utilisation by representatives of different stakeholder groups.

Introduction: The digitalisation of the German healthcare system enables a wide range of opportunities to utilize healthcare data. The implementation of the EHR in January 2021 was a significant step, but compared to other European countries, the implementation of the EHR in the German healthcare system is still at an early stage. The aim of this paper is to characterise the structural factors relating to the adoption of the EHR in more detail from the perspective of representatives of stakeholders working in the German healthcare system and to identify existing barriers to implementation and the need for change. Methods: Qualitative expert interviews were conducted with one representative from each of the stakeholder groups health insurance, pharmacies, healthcare research, EHR development and panel doctors. Results: The interviews with the various stakeholders revealed that the implementation process of the EHR is being delayed by a lack of a viable basis for decision-making, existing conflicts of interest and insufficient consideration of the needs of patients and service providers, among other things. Discussion: The current status of EHR implementation is due to deficiency in legal regulations as well as structural problems and the timing of the introduction. For instance, the access rights of various stakeholders to the EHR data and the procedure in the event of a technical failure of the telematics infrastructure are remain unclear. In addition, insufficient information and communication measures have not led to the desired acceptance of EHR use among patients and service providers.

Blockchain en salud: transformando la seguridad y la gestión de datos clínicos / Blockchain in health: Transforming security and clinical data management

Introducción Los avances tecnológicos continúan transformando la sociedad, incluyendo el sector de la salud. La naturaleza descentralizada y verificable de la tecnología blockchain presenta un gran potencial para abordar desafíos actuales en la gestión de datos sanitarios. Discusión Este artículo indaga sobre cómo la adopción generalizada de blockchain se enfrenta a importantes desafíos y barreras que deben abordarse, como la falta de regulación, la complejidad técnica, la salvaguarda de la privacidad y los costos tanto económicos como tecnológicos. La colaboración entre profesionales médicos, tecnólogos y legisladores es esencial para establecer un marco normativo sólido y una capacitación adecuada. Conclusión La tecnología blockchain tiene potencial de revolucionar la gestión de datos en el sector de la salud, mejorando la calidad de la atención médica, empoderando a los usuarios y fomentando la compartición segura de datos. Es necesario un cambio cultural y regulatorio, junto a más evidencia, para concluir sus ventajas frente a las alternativas tecnológicas existentes. (AU)

Introduction Technological advances continue to transform society, including the health sector. The decentralized and verifiable nature of blockchain technology presents great potential for addressing current challenges in healthcare data management. Discussion This article reports on how the generalized adoption of blockchain faces important challenges and barriers that must be addressed, such as the lack of regulation, technical complexity, safeguarding privacy, and economic and technological costs. Collaboration between medical professionals, technologists and legislators is essential to establish a solid regulatory framework and adequate training. Conclusion Blockchain technology has the potential to revolutionize data management in the healthcare sector, improving the quality of medical care, empowering users, and promoting the secure sharing of data, but an important cultural change is needed, along with more evidence, to reveal its advantages in front of the existing technological alternative. (AU)

Knowledge, Attitudes, and Practices about Electronic Personal Health Records: A Cross-Sectional Study in a Region of Northern Italy.

The Electronic Personal Health Record (EPHR) provides an innovative service for citizens and professionals to manage health data, promoting patient-centred care. It enhances communication between patients and physicians and improves accessibility to documents for remote medical information management. The study aims to assess the prevalence of awareness and acceptance of the EPHR in northern Italy and define determinants and barriers to its implementation. In 2022, a region-wide cross-sectional study was carried out through a paper-based and online survey shared among adult citizens. Univariable and multivariable regression models analysed the association between the outcome variables (knowledge and attitudes toward the EPHR) and selected independent variables. Overall, 1634 people were surveyed, and two-thirds were aware of the EPHR. Among those unaware of the EPHR, a high prevalence of specific socio-demographic groups, such as foreign-born individuals and those with lower educational levels, was highlighted. Multivariable regression models showed a positive association between being aware of the EPHR and educational level, health literacy, and perceived poor health status, whereas age was negatively associated. A higher knowledge of the EPHR was associated with a higher attitude towards the EPHR. The current analysis confirms a lack of awareness regarding the existence of the EPHR, especially among certain disadvantaged demographic groups. This should serve as a driving force for a powerful campaign tailored to specific categories of citizens for enhancing knowledge and usage of the EPHR. Involving professionals in promoting this tool is crucial for helping patients and managing health data.

Martha's rule: applying a behaviour change framework to understand the potential of complementary roles of clinicians and patients in improving safety of patients deteriorating in hospital.

AIMS/BACKGROUND: Martha's rule stipulates the right of patients and their families to escalate care as a way to improve safety while in hospital. This article analyses the possible impact of the proposed policy through the lens of a behaviour change framework and explores new opportunities presented by the implementation of Martha's rule.. METHODS: A descriptive analysis was undertaken of interactions between patients, family, friends and clinicians during clinical deterioration in hospital. The capability-opportunity-motivation behaviour change framework was applied to understand reasons for failure to respond to deterioration. RESULTS: Care of deteriorating patients requires recording of vital signs, recognition of abnormalities, reporting through escalation and response by a competent clinician. Regarding the care of patients who deteriorate in hospital, healthcare professionals have capability and motivation to provide safe, high-quality care, but often lack the physical and social opportunity to report or respond through lack of time and peer pressure. Patients and family members have motivation and might have time to support safety systems. Martha's rule or similar arrangements allow healthcare organisations to create opportunities for patients and families to report and escalate care to experts in critical care when they recognise deterioration. CONCLUSIONS: The capability-opportunity-motivation behaviour change framework provides insights into the causes of failure to rescue in deteriorating patients and an argument for opportunities through escalation by patients and families through Martha's rule. This might reduce the number of system failures and enable safer care.

A Patient-Centered Approach to Collecting and Displaying Patient Identifiers.

Patient identifiers such as name, date of birth, or gender are the first line of defense to ensure the accuracy of the health data displayed in health information exchange. Health data display is the impetus for clinical decisions and patient outcomes and directly correlates with promoting interoperability and health information exchange. Therefore, constant monitoring of quality metrics is imperative for clinical leaders to keep a pulse on what is happening within their organizations. However, the electronic health records (EHRs) designer should also take precautions to ensure the visualizations are not misleading, given that EHRs have been shown in some studies to lead to increased patient safety events.

Development Process for Type 2 Diabetes Patient Applications: Findings from a Literature Review.

For type 2 diabetes (T2D) patients, self-management of the disease is an essential part of the treatment. Patient portals and personal health records (PHRs) are powerful applications for self-managing T2D. It is however unclear what features of existing applications provide best support for self-management of type 2 diabetes. We retrieved and analyzed twenty-two studies to identify features which promote self-management of T2D. The results elicited 10 different features and showed that use of patient portals was associated with different health outcomes. Secure messaging, Viewing laboratory results, and Accessing medication history were the most common features, and some specific features were associated with health outcomes. In general, patient portals and PHRs were associated with improved health outcomes. Finally, nine overall recommendations for the development process of patient portals were identified.

Tabular, Annotated, Visual, or Trends + Contextual Information? Preferences for Online Laboratory Results Displays.

People are increasingly offered access to their personal health information (e.g., laboratory results, clinical notes, diagnostic imaging results). However, this information is the same as that used by health care providers with clinical expertise and training in medical terminology, which citizens typically do not have. In this study, we examined participants (N = 24) preferences for four different types of displays for online laboratory (lab) results: Tabular, Annotated, Visual, and Trends + Contextual Information. The Friedman test of difference comparing participants' ratings of the four displays was significant, χ2(3)=10.8, P=.013, and the Wilcoxon signed rank pairwise comparison tests revealed that participants rated the visual lab results display significantly more favourably than the traditional display (Z=-2.746, P=.006). These findings indicate that many people prefer lab results displayed using more visual cues and some perceived this format as easier to understand than the other display formats. Given the importance of people accessing, understanding, and using their own health information, it is crucial for displays and systems to provide a better user experience. Displaying data (e.g., lab results) visually is one possible way to improve interpretability of personal health information provided to the public.

Development and Testing of an Electronic Diabetes Diary Integrated With a Hospital Information System for Individuals With Type 2 Diabetes Mellitus: Protocol for a Mixed Methods Study.

BACKGROUND: Type 2 diabetes mellitus (T2DM) is one of the leading noncommunicable diseases that require diabetes self-management (DSM) practices. This study proposes to develop a customized mobile health (mHealth) app integrated with a hospital information system (HIS) to enable real-time, two-way transfer of information between the patient and physician. The captured information in the electronic health record will facilitate physicians to have a chronological account of the patient's diabetes history and enable tweaking of the treatment. OBJECTIVE: The objectives of the study are (1) to develop the HIS-integrated Electronic Diabetes Diary (EDDy) per the end-user expectations at a tertiary care hospital in a south Indian state with a high prevalence of T2DM and (2) to evaluate and test adherence to EDDy in the management of T2DM. METHODS: The study will be carried out in 3 phases. Phase 1 involved in-depth interviews with primary end users to gather information regarding their expectations from the hospital-based EDDy. Phase 2 will use this information to develop a customized mHealth app using an iterative model of software development. Phase 3 will involve a pre- and posttest design; the developed app will be tested among consenting patients, where physicians will receive the patients' data through the HIS-integrated mHealth app. The pre- and posttest values will be analyzed for adherence leading to improvement in patients' self-management of blood glucose, user experience, glycemic control, and clinical utility. RESULTS: Phase 1 was completed on November 28, 2023. Phase 2 commenced in December 2023 and will end in May 2025. Phase 3 will follow afterward. CONCLUSIONS: The proposed app will include a convenient and simple alert system that enables the patient to test glucose values at self-selected intervals, provide grading options to enter diabetic-related complications, enhance patients' knowledge of tracking and managing the complications of diabetes, and help in maintaining the visual representation of glucose values and complications. The simplicity and usability of the modules are its novelty, which may motivate the patients to keep track of their glucose values and help them attain better health outcomes. TRIAL REGISTRATION: Clinical Trial Registry India CTRI/2023/03/051077; http://tinyurl.com/4tau4ndb. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50732.

[Blockchain in health: Transforming security and clinical data management]. / Blockchain en salud: transformando la seguridad y la gestión de datos clínicos.

INTRODUCTION: Technological advances continue to transform society, including the health sector. The decentralized and verifiable nature of blockchain technology presents great potential for addressing current challenges in healthcare data management. DISCUSSION: This article reports on how the generalized adoption of blockchain faces important challenges and barriers that must be addressed, such as the lack of regulation, technical complexity, safeguarding privacy, and economic and technological costs. Collaboration between medical professionals, technologists and legislators is essential to establish a solid regulatory framework and adequate training. CONCLUSION: Blockchain technology has the potential to revolutionize data management in the healthcare sector, improving the quality of medical care, empowering users, and promoting the secure sharing of data, but an important cultural change is needed, along with more evidence, to reveal its advantages in front of the existing technological alternative.

Benefits of Information Technology in Healthcare: Artificial Intelligence, Internet of Things, and Personal Health Records.

OBJECTIVES: Systematic evaluations of the benefits of health information technology (HIT) play an essential role in enhancing healthcare quality by improving outcomes. However, there is limited empirical evidence regarding the benefits of IT adoption in healthcare settings. This study aimed to review the benefits of artificial intelligence (AI), the internet of things (IoT), and personal health records (PHR), based on scientific evidence. METHODS: The literature published in peer-reviewed journals between 2016 and 2022 was searched for systematic reviews and meta-analysis studies using the PubMed, Cochrane, and Embase databases. Manual searches were also performed using the reference lists of systematic reviews and eligible studies from major health informatics journals. The benefits of each HIT were assessed from multiple perspectives across four outcome domains. RESULTS: Twenty-four systematic review or meta-analysis studies on AI, IoT, and PHR were identified. The benefits of each HIT were assessed and summarized from a multifaceted perspective, focusing on four outcome domains: clinical, psycho-behavioral, managerial, and socioeconomic. The benefits varied depending on the nature of each type of HIT and the diseases to which they were applied. CONCLUSIONS: Overall, our review indicates that AI and PHR can positively impact clinical outcomes, while IoT holds potential for improving managerial efficiency. Despite ongoing research into the benefits of health IT in line with advances in healthcare, the existing evidence is limited in both volume and scope. The findings of our study can help identify areas for further investigation.

Estimating Cognitive Load in a Mobile Personal Health Record Application: A Cognitive Task Analysis Approach.

OBJECTIVES: Mobile health applications that are designed without considering usability criteria can lead to cognitive overload, resulting in the rejection of these apps. To avoid this problem, the user interface of mobile health applications should be evaluated for cognitive load. This evaluation can contribute to the improvement of the user interface and help prevent cognitive overload for the user. METHODS: In this study, we evaluated a mobile personal health records application using the cognitive task analysis method, specifically the goals, operators, methods, and selection rules (GOMS) approach, along with the related updated GOMS model and gesture-level model techniques. The GOMS method allowed us to determine the steps of the tasks and categorize them as physical or cognitive tasks. We then estimated the completion times of these tasks using the updated GOMS model and gesture-level model. RESULTS: All 10 identified tasks were split into 398 steps consisting of mental and physical operators. The time to complete all the tasks was 5.70 minutes and 5.45 minutes according to the updated GOMS model and gesture-level model, respectively. Mental operators covered 73% of the total fulfillment time of the tasks according to the updated GOMS model and 76% according to the gesture-level model. The inter-rater reliability analysis yielded an average of 0.80, indicating good reliability for the evaluation method. CONCLUSIONS: The majority of the task execution times comprised mental operators, suggesting that the cognitive load on users is high. To enhance the application's implementation, the number of mental operators should be reduced.

Evaluating the Landscape of Personal Health Records in Korea: Results of the National Health Informatization Survey.

OBJECTIVES: This study examined the adoption and utilization of personal health records (PHR) across Korean medical institutions using data from the 2020 National Health and Medical Informatization Survey. METHODS: Spearheaded by the Ministry of Health and Welfare and prominent academic societies, this study surveyed PHR utilization in 574 medical institutions. RESULTS: Among these institutions, 84.9% (487 hospitals) maintained medical portals. However, just 14.1% (81 hospitals) had web-based or mobile PHRs, with 66.7% (28 of 42) of tertiary care hospitals adopting them. Tertiary hospitals led in PHR services: 87.8% offered certification issuance, 51.2% provided educational information, 63.4% supported online payment, and 95.1% managed appointment reservations. In contrast, general and smaller hospitals had lower rates. Online medical information viewing was prominent in tertiary hospitals (64.3%). Most patients accessed test results via PHRs, but other data types were less frequent, and only a few allowed downloads. Despite the widespread access to medical data through PHRs, integration with wearables and biometric data transfers to electronic medical records remained low, with limited plans for expansion in the coming three years. CONCLUSIONS: Approximately two-thirds of the surveyed medical institutions provided PHRs, but hospitals and clinics in charge of community care had very limited PHR implementation. Government-led leadership is required to invigorate the use of PHRs in medical institutions.

Paving the way for increased e-health record use: elaborating intentions of Gen-Z.

This paper presents the determinants of personal e-health records adoption by the Gen-Z population and reveals barriers to use. Gen-Z members are one of the most prominent users of digital health services that have an influence on older generations' technology adoption but have often been overlooked in scholarly research. A survey of 1,000 Gen-Z university students based on modified UTAUT was used to address this research gap. The analysis revealed the vital role of social influence in paving the way for higher adoption among Gen-Z. Moreover, significant influences of performance expectancy, facilitating conditions, and e-health literacy on behavioural intentions were detected. Effort expectancy was found to be insignificant in impacting Gen-Z's intentions to adopt electronic health record systems. Moreover, privacy concerns acted as a barrier to adoption, yet the offsetting effect of users' trust in health systems was shown to be instrumental in overcoming such privacy-related barriers.

Patient and Health Care Provider Perspectives on Patient Access to Test Results via Web Portals: Scoping Review.

BACKGROUND: A frequently used feature of electronic patient portals is the viewing of test results. Research on patient portals is abundant and offers evidence to help portal implementers make policy and practice decisions. In contrast, no comparable comprehensive summary of research addresses the direct release of and patient access to test results. OBJECTIVE: This scoping review aims to analyze and synthesize published research focused on patient and health care provider perspectives on the direct release of laboratory, imaging, and radiology results to patients via web portals. METHODS: PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Searches were conducted in CINAHL, MEDLINE, and other databases. Citations were screened in Covidence using the inclusion and exclusion criteria. Primary studies that focused on patient and health care provider perspectives on patient access to laboratory and imaging results via web portals were included. An updated search was conducted up to August 2023. Our review included 27 articles-20 examining patient views, 3 examining provider views, and 4 examining both patient and provider views. Data extraction and inductive data analysis were informed by sensitizing concepts from sociomaterial perspectives, and 15 themes were generated. RESULTS: Patient perspectives (24 papers) were synthesized using nine themes: (1) patterns of use and patient characteristics; (2) emotional response when viewing the results and uncertainty about their implications; (3) understanding test results; (4) preferences for mode and timing of result release; (5). information seeking and patients' actions motivated by viewing results via a portal; (6) contemplating changes in behavior and managing own health; (7) benefits of accessing test results via a portal; (8) limitations of accessing test results via a portal; and (9) suggestions for portal improvement. Health care provider perspectives (7 papers) were synthetized into six themes: (1) providers' view of benefits of patient access to results via the portal; (2) effects on health care provider workload; (3) concerns about patient anxiety; (4) timing of result release into the patient portal; (5) the method of result release into the patient portal: manual versus automatic release; and (6) the effects of hospital health information technology system on patient quality outcomes. CONCLUSIONS: The timing of the release of test results emerged as a particularly important topic. In some countries, the policy context may motivate immediate release of most tests directly into patient portals. However, our findings aim to make policy makers, health administrators, and other stakeholders aware of factors to consider when making decisions about the timing of result release. This review is sensitive to the characteristics of patient populations and portal technology and can inform result release framework policies. The findings are timely, as patient portals have become more common internationally.

Subjective Cognitive Load Evaluation of a Mobile Personal Health Record Application.

Mobile Personal Health Records (mPHRs), which make it possible to track and manage users' health information, can be an important aid in improving people's health. Despite its potential benefits, poor usability of systems can hinder the adoption and use of mPHRs. This study aims to evaluate the usability of a mobile health application in terms of perceived cognitive workload and performance. The cognitive workload experienced by 30 volunteers (15 experienced and 15 inexperienced), was measured while performing the given tasks with the NASA-Task Load Index (NASA-RTLX) scale, and the duration of the fulfillment of the tasks by eye tracking device. While there was no significant difference between the two user groups in the completion time of the tasks, a significant difference was found in the perceived cognitive load. "Making an appointment", which could take much longer to complete than other tasks, resulted in the highest cognitive load for all users. Further usability research using think-aloud protocols and user interviews could provide insights into design improvements for reducing cognitive load and enhancing performance.

Impact of a switch to immediate release on the patient viewing of diagnostic test results in an online portal at an academic medical center.

Patient portals allow patients to access their personal health information. The 21st Century Cures Act in the United States sought to eliminate 'information blocking', requiring timely release upon request of electronic health information including diagnostic test results. Some health systems, including the one in the present study, chose a systematic switch to immediate release of all or nearly all diagnostic test results to patient portals as part of compliance with the Cures Act. Our primary objective was to study changes in the time to view test results by patients before and after implementation of Cures Act-related changes. This retrospective pre-post study included data from two 10-month time periods before and after implementation of Cures Act-related changes at an academic medical center. The study included all patients (adult and pediatric) with diagnostic testing (laboratory and imaging) performed in the outpatient, inpatient, or emergency department settings. Between February 9, 2020 and December 9, 2021, there was a total of 3 809 397 diagnostic tests from 204 605 unique patients (3 320 423 tests for adult patients; 488 974 for pediatric patients). Overall, 56.5% (115 627) of patients were female, 84.1% (172 048) white, and 96.5% (197 517) preferred English as primary language. The odds of viewing test results within 1 and 30 days after portal release increased monthly throughout both time periods before and after the Cures Act for all patients. The rate of increase was significantly higher after implementation only in the subgroup of tests belonging to adult patients with active MyChart accounts. Immediate release shifted a higher proportion of result/report release to weekends (3.2% pre-Cures vs 15.3% post-Cures), although patient viewing patterns by day of week and time of day were similar before and after immediate release changes. The switch to immediate release of diagnostic test results to the patient portal resulted in a higher fraction of results viewed within 1 day across outpatient, inpatient, and emergency department settings.

Patient and provider perspectives on the use of patient portals during pregnancy and the postpartum period.

INTRODUCTION: Interest in the use of patient portals to support prenatal and postpartum care is growing. This study was conducted to understand patient and provider perspectives about the impact of portal use during pregnancy and the postpartum period. METHODS: Interviews were conducted with 30 pregnant or postpartum patients and 15 obstetric care providers at an academic medical center that offers its patients access to an outpatient portal. Interview transcripts were analyzed deductively and inductively to categorize findings and identify emergent themes. RESULTS: Patients and providers described how use of a patient portal during pregnancy and postpartum impacted communication (by supporting convenient communication and access to information), care processes (by aiding appointment attendance and helping with medication management), and care experience (by reducing anxiety and promoting patient involvement). Interviewees provided suggestions to improve patient portal use in obstetric care including using portals to increase access to educational materials and supportive resources, to collect patient-generated data, and to increase patient involvement in postpartum care. DISCUSSION: Patient portals have particular value for patients' use during pregnancy and the postpartum period due to the frequency of healthcare visits and the heightened attention to one's health during this time. There are opportunities to tailor portal content and functions to patients' needs to improve communication, care processes, and care experiences for this patient population. Further improving the functionality of patient portals for patients' use during pregnancy and the postpartum period has the potential to positively impact patient experiences and health outcomes.

The Effects of Online Access to General Practice Medical Records Perceived by Patients: Longitudinal Survey Study.

BACKGROUND: Patient online access to medical records is assumed to facilitate patient empowerment and advance patient-centered health care. However, to date, the actual effects of online access to medical records perceived by patients and other outcomes are insufficiently empirically tested. OBJECTIVE: This study aimed to investigate the effects of online access to medical records on patient empowerment, informed decision-making, and the patient-provider relationship perceived by patients. METHODS: A nationwide, 2-wave, longitudinal survey study was conducted among Dutch adults (N=2402). Linear regression analyses were performed. In model 1, the perceived effects of online access to medical records (measured at T1 [first measurement; July 2021]) on 16 outcomes (measured at T2 [second measurement; January 2022]), which were associated with the use of online access to general practice medical records in previous research, were investigated. Model 2 included sociodemographic factors and patient characteristics as confounders. RESULTS: Users indicated more strongly than nonusers that online access to medical records would increase their participation in health care, improve the relationship with their general practitioner, and support informed decision-making. These results were robust when adjusted for the influence of confounders. Effect sizes were very small, with unstandardized regression coefficients (B) ranging between -0.39 and 0.28. Higher digital and health literacy were associated with higher ratings of almost all effects. CONCLUSIONS: Online access to medical records has the potential to empower patients and foster informed decision-making among patients. The effects in this study were small but might grow over time. Other factors, such as the attitude of general practitioners toward online access to medical records, might moderate these effects. The results indicate that the potential benefits of online access to medical records might be unevenly distributed. We suggest future exploration of the conditions under which online access to medical records can improve health care system functioning and efficiency without increasing health inequality.

Câncer nasal e dos seios paranasais relacionados à saúde ocupacional / Nasal and paranasal sinus cancer related to occupational health

Resumo: Esta pesquisa, apresentada no formato de artigo, está inserida na linha de pesquisa Processo de Cuidar em Saúde e Enfermagem, do Programa de Pós-Graduação em Enfermagem, e integra o Grupo de Pesquisa Multiprofissional em Saúde do Adulto da Universidade Federal do Paraná. Introdução: o câncer nasal e dos seios paranasais corresponde a menos de 1% dos demais tipos de câncer, com fatores etiológicos decorrentes do meio ambiente, das atividades ocupacionais e dos hábitos de vida, com período de latência que pode variar até 20 anos para o aparecimento dos sintomas neoplásicos. Objetivos: caracterizar o perfil sociodemográfico, clínico e ocupacional dos brasileiros com câncer nasossinusal; traduzir, adaptar culturalmente e validar o Questionario Sulla Storia di Lavoro e Sulle Abitudini di Vita utilizado pelo Registro Tumori Seni Nasali e Paranasali da Lombardia, Itália, para o contexto cultural brasileiro; examinar o perfil sociodemográfico, clínico e ocupacional dos pacientes com câncer nasossinusal e relacionar a ocupação com a exposição ao pó de couro, lenha, cromo e níquel. Artigo 1: é um estudo observacional, descritivo e retrospectivo, utilizando os dados secundários do Integrador de Registro Hospitalar de Câncer no período de 2007 a 2019, com os CIDs: C30.0 e C31.0 a C31.9. Foram analisados 1.803 registros e destacou-se que 1.161 (64%) eram do sexo masculino, com faixa etária predominante entre 50 e 59 anos (26%; n=298), da raça/cor branca (46%; n=535), solteiros (55%; n=640) e com ensino fundamental incompleto (40%; n=461), que tinham incidência da neoplasia no seio maxilar (52%; n=943), com estadiamento clínico grau IV (32%; n=575). A ocupação foi registrada nos brasileiros com câncer nasossinusal no Grupo 6 (64,7%; n=701) - trabalhadores agropecuários, florestais e da pesca, e no Grupo 8 (26,7%; n=289) - trabalhadores da produção de bens e serviços industriais, principalmente no Estado da Bahia (11%; n=206) e Minas Gerais (18%; n=327). Artigo 2: descreve um estudo metodológico com as etapas de tradução, síntese, retrotradução, relatório de retrotradução, revisão, teste piloto e tradução final proposto pelo European Organisation for Research and Treatment of Cancer. O instrumento foi dividido em 11 domínios conforme a característica das perguntas do instrumento original. O pré-teste foi realizado num hospital de referência em oncologia do Estado do Paraná, Brasil, com 15 participantes que foram os pacientes com câncer nasal e dos seios paranasais e cinco familiares, entre julho e setembro de 2021. O instrumento obteve um índice de 94% de concordância entre os juízes, que fizeram sugestões de inclusão, manutenção semântica e substituição em 11 domínios. No pré-teste os participantes fizeram confirmação do entendimento sobre as perguntas e os domínios de 100% (n=15), entretanto, todos tiveram dificuldade de interpretação da palavra "popper", e 53% (n= 8) fizeram proposições de melhoria no questionário. Um participante solicitou a inclusão do narguilé nos hábitos de fumo. Artigo 3: consiste num relato de séries de casos de um hospital de oncologia do Estado do Paraná, no Sul do Brasil, no período de 2005 a 2021. Foram incluídos pacientes com idade acima de 18 anos, de ambos os sexos, com CID C30 e o grupo C31, que estavam em acompanhamento de saúde nos últimos 12 meses na instituição hospitalar, ou familiares (no caso de óbito do paciente) com idade superior ou igual a 18 anos. Os participantes foram entrevistados com o Questionário sobre o Histórico de Trabalho e os Hábitos de Vida, com os dados obtidos analisados por frequência simples e absoluta Resultados: O Artigo 3 teve 52 participantes eram do sexo masculino (56%; n= 29), casados (31%; n= 16), com ensino fundamental completo (23%; n= 12) e sem histórico de tabagismo (27%; n= 14), onde a localização prevalente foi C30.0 em homens (33%; n=17) com carcinoma de células escamosas (40,3%; n= 21). A exposição carcinogênica com poeira da madeira (29,8%; n=17), cromo e níquel (17,5%; n=10) e com couro e derivados (14%; n=8). Conclusão: a frequência do câncer nasal e dos seios paranasais foi maior no sexo masculino, com ensino fundamental, nos trabalhadores agropecuários e da indústria de transformação e tiveram exposição ao agente carcinogênico; o estudo poderá motivar as reflexões acerca do acometimento do câncer nasal e dos seios paranasais no contexto brasileiro, principalmente de origem ocupacional, conforme as monografias do International Agency for Research on Cancer, que enfatiza a importância de utilizar um instrumento de investigação com informações complexas e essenciais do histórico ocupacional e dos hábitos de vida direcionado para o câncer nasal e dos seios paranasais.

Abstract: This study, presented in the form of an article, is part of the Care Process in Health and Nursing research line of the Postgraduate Program in Nursing, and the Multiprofessional Research Group in Adult Health at the Universidade Federal do Paraná. Introduction: nasal and paranasal sinus cancer corresponds to less than 1% of other types of cancer, has etiological factors resulting from the environment, occupational activities and lifestyle, and a latency period varying up to 20 years for the onset of neoplastic symptoms. Objectives: to characterize the sociodemographic, clinical and occupational profile of Brazilians with sinonasal cancer; translate, culturally adapt and validate the Questionario Sulla Storia di Lavoro e Sulle Abitudini di Vita used by the Registro Tumori Seni Nasali e Paranasali from Lombardy, Italy, for the Brazilian cultural context; to examine the sociodemographic, clinical and occupational profile of patients with sinonasal cancer, and relate the occupation to exposure to leather dust,wood dust, chromium and nickel. Article 1: is an observational, descriptive, retrospective study using secondary data from the Hospital Cancer Registry Integrator from 2007 to 2019 with ICDs: C30.0 and C31.0 to C31.9. Analysis of 1,803 records was performed, highlighting that 1,161 (64%) were male, predominant age group of 50-59 years (26%; n=298), white race/color (46%; n=535) , single (55%; n=640), incomplete primary education (40%; n=461), with incidence of neoplasia in the maxillary sinus (52%; n=943), and clinical staging grade IV (32%; n=575). The occupations registered in Brazilians with sinonasal cancer were in Group 6 (64.7%; n=701) - agricultural, forestry and fishing workers, and in Group 8 (26.7%; n=289) - workers in the production of industrial goods and services, mainly in the states of Bahia (11%; n=206) and Minas Gerais (18%; n=327). Article 2: describes a methodological study with the steps of translation, synthesis, back-translation, back-translation report, review, pilot test and final translation proposed by the European Organization for Research and Treatment of Cancer. The instrument was divided into 11 domains according to characteristics of the questions in the original instrument. The pre-test was carried out between July and September 2021 in a reference hospital in oncology in the state of Paraná, Brazil, with 15 participants that were patients with nasal and paranasal sinus cancer, and five family members. The instrument obtained an index of 94% agreement among judges, who made suggestions for inclusion, semantic maintenance and replacement in 11 domains. In the pre-test, although participants confirmed their 100% (n=15) understanding of questions and domains, all had difficulty interpreting the word "popper", and 53% (n=8) made suggestions for improvements in the questionnaire. One participant requested the inclusion of hookah in smoking habits. Article 3: consists of a case series report from an oncology hospital in the state of Paraná, southern Brazil, from 2005 to 2021. Patients of both sexes aged over 18 years, with ICD C30 and group C31, under healthcare in the last 12 months at the hospital, or family members (in the case of patient's death) aged 18 years or older were included. Participants were interviewed using the Work History and Lifestyle Questionnaire. The data obtained were analyzed by simple and absolute frequency. Results: Article 3 had 52 participants that were male (56%; n= 29), married (31%; n= 16), with complete primary education (23%; n= 12) and no history of smoking (27 %; n=14), and the prevalent location was C30.0 in men (33%; n=17) with squamous cell carcinoma (40.3%; n=21). Carcinogenic exposure to wood dust (29.8%; n=17), chromium and nickel (17.5%; n=10), and leather and leather products (14%; n=8). Conclusion: the frequency of nasal and paranasal sinus cancer was higher in males with primary education, in agricultural workers and in the manufacturing industry who were exposed to the carcinogenic agent; the study may motivate reflections on the involvement of nasal and paranasal sinus cancer in the Brazilian context, mainly of occupational origin, according to monographs of the International Agency for Research on Cancer, which emphasizes the importance of using a research instrument with complex and essential information of occupational history and lifestyle habits directed to nasal and paranasal sinus cancer.