Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study.

BACKGROUND: To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care. We intend to co-design a nationwide digital personal health record (PHR) for patients to help manage their health information. For this, user perspectives are crucial. OBJECTIVE: This study aims to assess patients' and health care providers' perspectives regarding the use of a PHR in hemophilia care in the Netherlands, required functionalities, and expectations and concerns. METHODS: In this semistructured interview study, 19 pediatric and adult persons with hemophilia, parents, and women with other inherited bleeding disorders, as well as 18 health care providers working within and outside of hemophilia treatment centers, participated. Perspectives of patients and providers were explored separately. To explore requirements, participants were asked to prioritize functionalities. RESULTS: Participants expected a PHR would increase the transparency of health information, improve patients' understanding of their illness, and help the coordination of care between health care providers and institutions. Prioritized functionalities included the integration of relevant health information and patient-entered data. Formulated expectations and concerns focused on 4 themes: usability, safety, inclusiveness, and implementation. While patients expressed worries over medicalization (ie, more confrontational reminders of their illness), providers were concerned about an increased workload. CONCLUSIONS: People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition.

Proposal for a Patient Centered Health Information Framework for Clinical and Personal Data Movement.

This paper focuses on defining a framework to allow individual patients to track their own health related data. We propose a Patient Centered Information Framework (PCIF) allowing patient to manage their own data by using discharge letters. Discharge letters summarize information from a hospital stay, such as medical history, diagnoses, treatments and follow up, needed for continuity of care. It enables patients to share data with different organizations ensuring personal data protection, even when moving from different places and countries. A record of clinical management may thus be guaranteed when moving among different health structures as well as simplifying obtaining medications. We propose an approach to allow citizens to manage their health related data in a cross borders fashion. We compare the regulation of discharge letters among a sample of countries. We propose a management protocol for using a commonly adopted patient discharge letter framework within a PCIF.

Problem Detection and Optimization of a Personal Health Record Driven by a Helpdesk Support Tool.

This study aims to assess the value of a help desk in a Personal Health Record (PHR) for monitoring and improving PHR functionalities and processes. Through analysis of 327 help desk tickets categorized by users as telemedicine and PHR requests, we identified four main gaps: information and feedback, access to clinical documents, usability, and ubiquity. The tickets highlighted end users' needs such as timely feedback, contextual information, effective communication, and ease of access to clinical documentation. These findings were crucial for initiating improvement cycles for various functionalities and processes within the PHR.

Empowering Citizens Through Translated Patient Summary Access and Sharing in Digital Health Ecosystems.

This paper introduces a mobile framework designed to enhance citizen access to and sharing of health data, aiming to empower individuals with greater control over their personal health information. Accessing and sharing health-related data is essential in everyday scenarios, from routine doctor visits or viewing your health on your own to emergencies where swift access can save lives. It addresses the challenges posed by the fragmented nature of healthcare services and the barriers of language differences in patient records. The framework utilizes the EU eHealth Digital Service Infrastructure (eHDSI) OpenNCP for translating patient summaries and the FHIR Smart Health Links Protocol for secure sharing. A pilot study with 40 participants was conducted to assess the usability and effectiveness of the app, revealing a strong demand among citizens for such innovative health services.

Secure Extraction of Personal Information from EHR by Federated Machine Learning.

Secure extraction of Personally Identifiable Information (PII) from Electronic Health Records (EHRs) presents significant privacy and security challenges. This study explores the application of Federated Learning (FL) to overcome these challenges within the context of French EHRs. By utilizing a multilingual BERT model in an FL simulation involving 20 hospitals, each represented by a unique medical department or pole, we compared the performance of two setups: individual models, where each hospital uses only its own training and validation data without engaging in the FL process, and federated models, where multiple hospitals collaborate to train a global FL model. Our findings demonstrate that FL models not only preserve data confidentiality but also outperform the individual models. In fact, the Global FL model achieved an F1 score of 75,7%, slightly comparable to that of the Centralized approach at 78,5%. This research underscores the potential of FL in extracting PIIs from EHRs, encouraging its broader adoption in health data analysis.

GPT-Based Model for Concise Summaries of Patient Health Information.

Although Patient Health Records (PHRs) are vital tools for patients, enabling them to access and manage health information, it remains challenging for doctors and patients to gather a swift overview of a patient's health status based on the extensive information included in the PHR. Our study introduces a generative pre-trained transformer-based language model to summarize health information documented in previously developed PHRs efficiently. By fine-tuning the model, we achieved results comparable to those of other studies in this domain, despite utilizing a smaller dataset. This data-to-text application represents a novel method that can be expected to promote enhanced information management in the medical field.

Public attitudes towards personal health data sharing in long-term epidemiological research: a Citizen Science approach in the KORA study.

BACKGROUND: Loss to follow-up in long-term epidemiological studies is well-known and often substantial. Consequently, there is a risk of bias to the results. The motivation to take part in an epidemiological study can change over time, but the ways to minimize loss to follow-up are not well studied. The Citizen Science approach offers researchers to engage in direct discussions with study participants and to integrate their opinions and requirements into cohort management. METHODS: Guided group discussions were conducted with study participants from the KORA cohort in the Augsburg Region in Germany, established 40 years ago, as well as a group of independently selected citizens. The aim was to look at the relevant aspects of health studies with a focus on long-term participation. A two-sided questionnaire was developed subsequently in a co-creation process and presented to 500 KORA participants and 2,400 employees of the research facility Helmholtz Munich. RESULTS: The discussions revealed that altruistic motivations, (i.e. supporting research and public health), personal benefits (i.e. a health check-up during a study examination), data protection, and information about research results in layman's terms were crucial to ensure interest and long-term study participation. The results of the questionnaire confirmed these aspects and showed that exclusively digital information channels may be an obstacle for older and less educated people. Thus, paper-based media such as newsletters are still important. CONCLUSIONS: The findings shed light on cohort management and long-term engagement with study participants. A long-term health study needs to benefit public and individual health; the institution needs to be trustworthy; and the results and their impact need to be disseminated in widely understandable terms and by the right means of communication back to the participants.

Opportunities and challenges of a dynamic consent-based application: personalized options for personal health data sharing and utilization.

BACKGROUND: The principles of dynamic consent are based on the idea of safeguarding the autonomy of individuals by providing them with personalized options to choose from regarding the sharing and utilization of personal health data. To facilitate the widespread introduction of dynamic consent concepts in practice, individuals must perceive these procedures as useful and easy to use. This study examines the user experience of a dynamic consent-based application, in particular focusing on personalized options, and explores whether this approach may be useful in terms of ensuring the autonomy of data subjects in personal health data usage. METHODS: This study investigated the user experience of MyHealthHub, a dynamic consent-based application, among adults aged 18 years or older living in South Korea. Eight tasks exploring the primary aspects of dynamic consent principles-including providing consent, monitoring consent history, and managing personalized options were provided to participants. Feedback on the experiences of testing MyHealthHub was gathered via multiple-choice and open-ended questionnaire items. RESULTS: A total of 30 participants provided dynamic consent through the MyHealthHub application. Most participants successfully completed all the provided tasks without assistance and regarded the personalized options favourably. Concerns about the security and reliability of the digital-based consent system were raised, in contrast to positive responses elicited in other aspects, such as perceived usefulness and ease of use. CONCLUSIONS: Dynamic consent is an ethically advantageous approach for the sharing and utilization of personal health data. Personalized options have the potential to serve as pragmatic safeguards for the autonomy of individuals in the sharing and utilization of personal health data. Incorporating the principles of dynamic consent into real-world scenarios requires remaining issues, such as the need for powerful authentication mechanisms that bolster privacy and security, to be addressed. This would enhance the trustworthiness of dynamic consent-based applications while preserving their ethical advantages.

Towards an Interoperability Landscape for a National Research Data Infrastructure for Personal Health Data.

The German initiative "National Research Data Infrastructure for Personal Health Data" (NFDI4Health) focuses on research data management in health research. It aims to foster and develop harmonized informatics standards for public health, epidemiological studies, and clinical trials, facilitating access to relevant data and metadata standards. This publication lists syntactic and semantic data standards of potential use for NFDI4Health and beyond, based on interdisciplinary meetings and workshops, mappings of study questionnaires and the NFDI4Health metadata schema, and literature search. Included are 7 syntactic, 32 semantic and 9 combined syntactic and semantic standards. In addition, 101 ISO Standards from ISO/TC 215 Health Informatics and ISO/TC 276 Biotechnology could be identified as being potentially relevant. The work emphasizes the utilization of standards for epidemiological and health research data ensuring interoperability as well as the compatibility to NFDI4Health, its use cases, and to (inter-)national efforts within these sectors. The goal is to foster collaborative and inter-sectoral work in health research and initiate a debate around the potential of using common standards.

Factor Analysis of Patients Who Find Tablets or Capsules Difficult to Swallow Due to Their Large Size: Using the Personal Health Record Infrastructure of Electronic Medication Notebooks.

BACKGROUND: Understanding patient preference regarding taking tablet or capsule formulations plays a pivotal role in treatment efficacy and adherence. Therefore, these preferences should be taken into account when designing formulations and prescriptions. OBJECTIVE: This study investigates the factors affecting patient preference in patients who have difficulties swallowing large tablets or capsules and aims to identify appropriate sizes for tablets and capsules. METHODS: A robust data set was developed based on a questionnaire survey conducted from December 1, 2022, to December 7, 2022, using the harmo smartphone app operated by harmo Co, Ltd. The data set included patient input regarding their tablet and capsule preferences, personal health records (including dispensing history), and drug formulation information (available from package inserts). Based on the medication formulation information, 6 indices were set for each of the tablets or capsules that were considered difficult to swallow owing to their large size and concomitant tablets or capsules (used as controls). Receiver operating characteristic (ROC) analysis was used to evaluate the performance of each index. The index demonstrating the highest area under the curve of the ROC was selected as the best index to determine the tablet or capsule size that leads to swallowing difficulties. From the generated ROCs, the point with the highest discriminative performance that maximized the Youden index was identified, and the optimal threshold for each index was calculated. Multivariate logistic regression analysis was performed to identify the risk factors contributing to difficulty in swallowing oversized tablets or capsules. Additionally, decision tree analysis was performed to estimate the combined risk from several factors, using risk factors that were significant in the multivariate logistic regression analysis. RESULTS: This study analyzed 147 large tablets or capsules and 624 control tablets or capsules. The "long diameter + short diameter + thickness" index (with a 21.5 mm threshold) was identified as the best indicator for causing swallowing difficulties in patients. The multivariate logistic regression analysis (including 132 patients with swallowing difficulties and 1283 patients without) results identified the following contributory risk factors: aged <50 years (odds ratio [OR] 1.59, 95% CI 1.03-2.44), female (OR 2.54, 95% CI 1.70-3.78), dysphagia (OR 3.54, 95% CI 2.22-5.65), and taking large tablets or capsules (OR 9.74, 95% CI 5.19-18.29). The decision tree analysis results suggested an elevated risk of swallowing difficulties for patients with taking large tablets or capsules. CONCLUSIONS: This study identified the most appropriate index and threshold for indicating that a given tablet or capsule size will cause swallowing difficulties, as well as the contributory risk factors. Although some sampling biases (eg, only including smartphone users) may exist, our results can guide the design of patient-friendly formulations and prescriptions, promoting better medication adherence.

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.

What Should Students and Trainees Learn About Patient-Centered Documentation?

What clinicians document about patients can have important consequences for those patients. Paternalistic language in patients' health records is of specific ethical concern because it emphasizes clinicians' power and patients' vulnerabilities and can be demeaning and traumatizing. This article considers the importance of person-centered, trauma-informed language in clinical documentation and suggests strategies for teaching students and trainees documentation practices that express clinical neutrality and respect.

The Use of Digital Personal Health Records (PHR) in Occupational Health.

The exact definition of a personal health record (PHR) is not clear, but it is generally defined as an electronic record of an individual's medical examination results and medication history that can be accurately tracked by the individual and family members. There are many opportunities to obtain personal PHR data in the field of occupational health, and the amount of information in a worker's PHR is enormous. It is necessary in this field to comprehensively integrate and accumulate not only information from medical examinations, but also records of the work environment and work records as personal health information.

Mortality risk following end-of-life caregiving: A population-based analysis of hospice users and their families.

Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women.

Systematic review and meta-analysis for a Global Patient co-Owned Cloud (GPOC).

Cloud-based personal health records increase globally. The GPOC series introduces the concept of a Global Patient co-Owned Cloud (GPOC) of personal health records. Here, we present the GPOC series' Prospective Register of Systematic Reviews (PROSPERO) registered and Preferred Reporting Items Systematic and Meta-Analyses (PRISMA)-guided systematic review and meta-analysis. It examines cloud-based personal health records and factors such as data security, efficiency, privacy and cost-based measures. It is a meta-analysis of twelve relevant axes encompassing performance, cryptography and parameters based on efficiency (runtimes, key generation times), security (access policies, encryption, decryption) and cost (gas). This aims to generate a basis for further research, a GPOC sandbox model, and a possible construction of a global platform. This area lacks standard and shows marked heterogeneity. A consensus within this field would be beneficial to the development of a GPOC. A GPOC could spark the development and global dissemination of artificial intelligence in healthcare.

Blockchain-secure patient Digital Twin in healthcare using smart contracts.

Modern healthcare has a sharp focus on data aggregation and processing technologies. Consequently, from a data perspective, a patient may be regarded as a timestamped list of medical conditions and their corresponding corrective interventions. Technologies to securely aggregate and access data for individual patients in the quest for precision medicine have led to the adoption of Digital Twins in healthcare. Digital Twins are used in manufacturing and engineering to produce digital models of physical objects that capture the essence of device operation to enable and drive optimization. Thus, a patient's Digital Twin can significantly improve health data sharing. However, creating the Digital Twin from multiple data sources, such as the patient's electronic medical records (EMR) and personal health records (PHR) from wearable devices, presents some risks to the security of the model and the patient. The constituent data for the Digital Twin should be accessible only with permission from relevant entities and thus requires authentication, privacy, and provable provenance. This paper proposes a blockchain-secure patient Digital Twin that relies on smart contracts to automate the updating and communication processes that maintain the Digital Twin. The smart contracts govern the response the Digital Twin provides when queried, based on policies created for each patient. We highlight four research points: access control, interaction, privacy, and security of the Digital Twin and we evaluate the Digital Twin in terms of latency in the network, smart contract execution times, and data storage costs.

Experiences of Patients With Mental Health Issues Having Web-Based Access to Their Records: National Patient Survey.

BACKGROUND: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. OBJECTIVE: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. METHODS: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. RESULTS: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health issues (mean_mental health 3.38, SD_mental health 1.21; mean_others 3.52, SD_others 1.18; P=.02) believe that PAEHRs help them in shared decision-making compared to other patient groups. CONCLUSIONS: Patients with mental health issues who took part in the survey, as a group, express some minor differences in both the use of the PAEHR and their experiences regarding its usefulness, as compared to other patients, as a group. This patient group shows a slightly higher interest in 2 types of use: checking for accuracy of care in the record and blocking access to mental health notes for professionals from other parts of the health care system. Compared to other patient groups, these patients are less likely to experience that the PAEHR is a support in shared decision-making. The study indicates that the benefits of PAEHR on a general level are the same for this patient group as for other patients. The study does not support clinicians' worry about possible harm to this patient group. Further research is however needed.

Patients' Experiences of Demanded Access to Online Health Records.

Patient-Accessible Electronic Health Records (PAEHR) is particularly controversial in mental healthcare. We aim to explore if there is any association between patients with mental health conditions and the experience of someone demanding access to their PAEHR. A chi-square test showed a significant association between group belonging and experiences of someone demanding access to the PAEHR.

A Narrative Review of Sociodemographic Disparities in Relation to PEHR Access.

Personal electronic health records (PEHRs) enable patients access to their own medical records. Differences in access and use of PEHRs may create health disparities. We conducted a narrative literature review regarding the effects of race, language preference, education, income, and homelessness on PEHR usage as well as PEHRs content, particularly stigmatizing language. Of 3177 citations found, 75 articles were relevant. Patient race, language, income, and education predicted PEHR use, which could potentially exacerbate health disparities.

Patient Access to Health Data: A Review of Philosophic and Healthcare Issues.

In 2012 Australia created a national Personal Controlled Electronic Health Record (PCEHR) known as "My Health Record" (MHR). However, MHR has seen low patient utilization. Debate regarding MHR has centered on utility and moral issues (e.g. data privacy). We conducted a narrative review to assess patient perception and clinical utility of PCEHRs worldwide. Results show patient and clinician support for PCEHRs but little evidence of improved outcomes and patient concerns regarding data providence.