Web-based Personal Health Record Research Articles

Minimum Dataset of Lung Cancer Patients: An Initial Step Towards Developing a Web-Based Personal Health Record

Background: Personal Health Records (PHR), which utilize advanced health information technology tools, play a crucial role in patient self-management and improving the control of chronic diseases such as lung cancer. To optimize the design of these systems, it is essential to determine the necessary data elements. Objectives: This study aims to identify the minimum dataset required for designing a web-based PHR for lung cancer patients. Methods: This descriptive, cross-sectional research was conducted in 2023. Initially, a lung cancer dataset was extracted through text analysis. In the next phase, a proposed minimum lung cancer dataset was formulated into a questionnaire containing 18 data groups, including 126 data elements. The dataset underwent expert validation in two phases using the Delphi technique. Data analysis was performed using SPSS version 26, with descriptive statistics employed. Results: The minimum web-based PHR dataset for lung cancer patients, consisting of 18 data groups (112 data elements), includes demographics, insurance information, emergency contact details, patient symptoms, tumor-related data, physician details, treatment information, patient-reported measurements, personal medical history, history of procedures and surgeries, visits, allergies, family history, medication information, test results, imaging data, dietary information, and educational materials. Conclusions: Based on the study findings, it is recommended that lung cancer data management encompass not only routine information but also additional dimensions such as allergies, tumor-related information, and dietary details. Collecting comprehensive and complete data can significantly enhance the treatment process and post-treatment follow-up.

A blockchain-enabled sharing platform for personal health records

BackgroundLongitudinal personal health record (PHR) provides a foundation for managing patients' health care, but we do not have such a system in the U.S. except for the patients in the Department of Veterans Affairs. Such a gap exists mainly in the rest of the U.S. by the fact that patients' electronic health records are scattered across multiple health care facilities and often not shared due to privacy, security, and business interests concerns from both patients and health care organizations. In addition, patients have ethical concerns related to consent. To patients, data security, privacy, and consent are based on trustfulness, rather than patients’ engagement in ensuring only authorized people can view their PHRs with patient-managed granularity. Resolving these challenges is an important step in making longitudinal PHR useful for patient care. ObjectiveThis research aims to design and implement a blockchain-enabled sharing platform prototype for PHR with desired patient-controlled data security, privacy, and consent granularity. MethodsBuilt upon our prior work of a blockchain-enabled access control (BAC) model, we design a blockchain-enabled sharing platform for PHR with patient-controlled security, privacy, and consent granularity. We further implement the construct by building a prototypical platform among a patient and two typical health care organizations. Health organizations that hold the patient's electronic health records can join the platform with trust based on the validation from the patient. The mutual trust can be established through a rigorous validation process by both the patient and the built-in Hyperledger Fabric blockchain consensus mechanism. ResultsWe proposed a system trusted by patients and health care providers and constructed a Web-based PHR sharing platform with patient-controlled security, privacy, and consent granularity. We analyzed the system scalability in three aspects and showed millisecond range of performance when simultaneously changing access permissions on hundreds of PHRs. Consent, security and privacy of the model are ensured by the merits of the BAC model. We discovered the current blockchain model limits the system scalability due to using a non-graphical database. A new graphical database is suggested for future improvements. ConclusionsIn this research, we report a solution to electronically sharing and managing patients’ electronic health records originating from multiple organizations, focusing on privacy, security, and granularity control of consent in the U.S. Specifically, the system protects data security and privacy, and provides auditability, scalability, distributedness, patient consent autonomy, and zero-trust capabilities. The prototypical instantiation of the designed model suggested the feasibility of combining emerging blockchain technology with next generation access control model to tackle a longstanding longitudinal PHR problem.

Digital Health Literacy as a Predictor of Awareness, Engagement, and Use of a National Web-Based Personal Health Record: Population-Based Survey Study

BackgroundWeb-based personal health records (PHRs) have the potential to improve the quality, accuracy, and timeliness of health care. However, the international uptake of web-based PHRs has been slow. Populations experiencing disadvantages are less likely to use web-based PHRs, potentially widening health inequities within and among countries.ObjectiveWith limited understanding of the predictors of community uptake and use of web-based PHR, the aim of this study was to identify the predictors of awareness, engagement, and use of the Australian national web-based PHR, My Health Record (MyHR).MethodsA population-based survey of adult participants residing in regional Victoria, Australia, was conducted in 2018 using telephone interviews. Logistic regression, adjusted for age, was used to assess the relationship among digital health literacy, health literacy, and demographic characteristics, and the 3 dependent variables of MyHR: awareness, engagement, and use. Digital health literacy and health literacy were measured using multidimensional tools, using all 7 scales of the eHealth Literacy Questionnaire and 4 out of the 9 scales of the Health Literacy Questionnaire.ResultsA total of 998 responses were analyzed. Many elements of digital health literacy were strongly associated with MyHR awareness, engagement, and use. A 1-unit increase in each of the 7 eHealth Literacy Questionnaire scales was associated with a 2- to 4-fold increase in the odds of using MyHR: using technology to process health information (odds ratio [OR] 4.14, 95% CI 2.34-7.31), understanding of health concepts and language (OR 2.25, 95% CI 1.08-4.69), ability to actively engage with digital services (OR 4.44, 95% CI 2.55-7.75), feel safe and in control (OR 2.36, 95% CI 1.43-3.88), motivated to engage with digital services (OR 4.24, 95% CI 2.36-7.61), access to digital services that work (OR 2.49, 95% CI 1.32-4.69), and digital services that suit individual needs (OR 3.48, 95% CI 1.97-6.15). The Health Literacy Questionnaire scales of health care support, actively managing health, and social support were also associated with a 1- to 2-fold increase in the odds of using MyHR. Using the internet to search for health information was another strong predictor; however, older people and those with less education were less likely to use MyHR.ConclusionsThis study revealed strong and consistent patterns of association between digital health literacy and the use of a web-based PHR. The results indicate potential actions for promoting PHR uptake, including improving digital technology and skill experiences that may improve digital health literacy and willingness to engage in web-based PHR. Uptake may also be improved through more responsive digital services, strengthened health care, and better social support. A holistic approach, including targeted solutions, is needed to ensure that web-based PHR can realize its full potential to help reduce health inequities.

Impact of a Personal Health Record Intervention Upon Surveillance Among Colorectal Cancer Survivors: Feasibility Study.

BackgroundThere are currently an estimated 1.5 million individuals living in the United States with colorectal cancer (CRC), and although the 5-year survival rate has increased, survivors are at risk for recurrence, particularly within the first 2-3 years after treatment. National guidelines recommend continued surveillance after resection to identify recurrence early on. Adherence among survivors ranges from 23% to 94%. Novel interventions are needed to increase CRC survivors’ knowledge and confidence in managing their cancer and thus to increase adherence to follow-up surveillance.ObjectiveThe objective of this study is to develop and test the feasibility and efficacy of a stand-alone, web-based personal health record (PHR) to increase surveillance adherence among CRC survivors, with patient beliefs about surveillance as secondary outcomes.MethodsA pre- and postintervention feasibility trial was conducted testing the efficacy of the colorectal cancer survivor (CRCS)–PHR, which had been previously developed using an iterative, user-centered design approach.ResultsThe average age of the sample was 58 (SD 9.9) years, with 57% (16/28) male and the majority married (20/28, 71%) and employed full-time (15/28, 54%). We observed a significant increase in adherence to colonoscopy (before: 11/21, 52% vs after: 18/21, 86%; P=.005) and CEA (14/21, 67% vs 20/21, 95%; P=.01), as well as a slight increase in CT scans (14/21, 67% vs 18/21, 86%; P=.10). The only significant impact on secondary outcome (patient beliefs) was benefits of CEA test (P=.04), as most of the beliefs were high at baseline.ConclusionsThis feasibility study lays the groundwork for continued development of the CRCS-PHR to increase CRC surveillance. Patient-centered technologies, such as the CRCS-PHR, represent an important potential approach to improving the receipt of guideline-concordant care and follow-up surveillance, and not just for CRC survivors. Researchers should continue to develop patient-centered health technologies with clinician implementation in mind to increase patient self-efficacy and surveillance adherence.

Identifying a minimum data set as a necessity to design a web-based personal health record for patients under chronic dialysis

Objective:Many people suffer from kidney disease, and self-management is essential in these patients. Personal health record (PHR) can be used as a tool to improve self-management in these patients. This study aimed to identify a minimum data set (MDS) of PHR in dialysis patients.Methods:This descriptive and cross-sectional study was conducted in 2019, and national and international scientific literature entitled “Personal Health Record,” “Electronic Personal Health Record,” “Dialysis Patient Portal,” “Dialysis Health Record,” and “Dialysis Information Needs” by content analysis method was reviewed. A questionnaire with 14 items was designed to examine patients’ problems and data needs based on the review of scientific literature and web-based PHRs. Based on the patients’ survey and the review of scientific literature, a questionnaire with 114 questions was designed. Finally, with experts’ opinions, data elements were determined.Results:An MDS for developing web-based PHR for patients under chronic dialysis was created with 17 data classes including demographic information, insurance information, contact information in case of emergency, information on dialysis sessions, physicians information, dialysis center information, information on individual measured values (blood pressure, blood sugar, and weight), disease history information, information on surgical procedures and operations, history of visits, allergies, vaccinations, family history, drugs, laboratory tests, diet, and education materials for the patient.Conclusion:In this study, an MDS was developed for a web-based PHR for dialysis patients. The use of standard data can help collect the data that is essential to improve the patient’s health and track his medical condition.

Design and evaluation of a web-based personal health record for patients under dialysis

BackgroundIn the end stages of chronic kidney disease, patients need kidney replacement therapy, such as dialysis and transplantation. Self-care and self-management are essential in dialysis patients at this stage. One of the tools that can facilitate self-management for patients is Personal Health Records (PHRs). This study aimed to design, develop and evaluate a PHR for patients under dialysis. Materials and methodsIn this study, a PHR was developed in three phases. In the first phase, the minimum data set for the PHR was determined by literature review as well as surveys of patients and experts. In the second phase, the PHR was designed by the PHP web programming language. In the third phase, the usability of designed system was evaluated by the heuristic evaluation method. ResultsLiterature review and surveys of patients and experts led to the identification of 17 main data sets. In this study, 114 fields were created through 41 tables in the MySQL database. After evaluating the designed system, 26 unique problems were identified. The highest percentage of problems with 19% (n = 5) was related to “error prevention”. ConclusionsThe designed PHR for patients undergoing chronic dialysis had satisfactory usability. Therefore, this web-based system can be efficiently used for the disease management of dialysis patients.

Investigating the Impact of Usability on Energy Efficiency of Web-based Personal Health Records.

Usability plays an important role in eHealth applications for their widespread adoption. These software systems have been studied in depth in the literature from this perspective. However, the energy consumption of information systems in the eHealth domain lacks comprehensive research. In this paper, the relationship between the energy consumption of the main components of a PC and the usability evaluations of graphical user interfaces (GUI) were studied in client applications. For this purpose, personal health records (PHR) were used as a case study. A set of 4 web-based PHRs were evaluated with the performance of 20 common tasks in the aforementioned systems. The usability evaluations were carried out by 4 experts. A total of 8 heuristics particularly designed for electronic health record systems and based on the Nielsen usability heuristics were employed. The instantaneous energy values of the power supply and the monitor were collected with an energy consumption measuring equipment. As a result, the following significant correlations were found. In NoMoreClipboard between the Memory heuristic and the power supply (rs = 0.495, p = 0.044), and the Minimalist heuristic and the monitor (rs = - 0.513, p = 0.035). In PatientsLikeMe between the Minimalist heuristic and the power supply (rs = - 0.479, p = 0.083), as well as in the Error heuristic and the power supply (rs = - 0.638, p = 0.014). Finally, in Health Companion between the Match heuristic and the power supply (rs = - 0.481, p = 0.043), and the Error heuristic and the power supply again (rs = - 0.602, p = 0.008). Apart from that, the tasks were divided into those with excellent and fair usability. Those tasks with high usability scores were evaluated to detect whether they also had low energy consumption during task performance. Significant differences were found in PatientsLikeMe with respect to the Error heuristic and the power supply (212.39 ± 18.85W). Significant differences were also found in Health Companion with respect to the Match heuristic and the power supply (199.91 ± 7.19W). The results were discussed to reveal the fundamentals of how implementing usability can impact on energy costs when running client applications.

Electronic Personal Health Records and the Question of Privacy

Personal health records (PHRs), centralized places for consumers to electronically store, manage, and share their personal health information, offer new opportunities to help consumers manage their own health and health care. However, ensuring the privacy and confidentiality of health information contained within PHRs is challenging. This paper analyzes the major properties of existing PHR systems and identifies specific privacy and security issues with each type of PHR. It proposes a consumer-controlled privacy protection approach that includes high-minded privacy principles such as independent consent management, independent privacy and security audits, and regulatory compliance requirements. It further presents a consumer-controlled system architecture that embodies these principles in the web-based PHR system.

Valuing Citizen Access to Digital Health Services: Applied Value-Based Outcomes in the Canadian Context and Tools for Modernizing Health Systems.

BackgroundIn publicly funded health systems, digital health technologies are strategies that aim to improve the quality and safety of health care service delivery and enhance patient experiences and outcomes. In Canada, governments and health organizations have invested in digital health technologies such as personal health records (PHRs) and other electronic service functionalities and innovation across provincial and territorial health systems.ObjectivePatients’ access to their own information via secure, Web-based PHRs and integrated virtual care services are promising mechanisms for supporting patient engagement in health care. We draw on current evidence to develop an economic model that estimates the demonstrated and potential value of these digital health initiatives.MethodsWe first synthesized results from a variety of Canadian and international studies on the outcomes for patients and service providers associated with PHRs across a continuum of services, ranging from viewing information (eg, laboratory results) on the Web to electronic prescription renewal to email or video conferencing with care teams and providers. We then developed a quantitative model of estimated value, grounded in these demonstrated benefits and citizen use (2016-2017). In addition to estimating the costs saved from patient and system perspectives, we used a novel application of a compensating differential approach to assess the value (independent of costs) to society of improved health and well-being resulting from PHR use.ResultsPatients’ access to a range of digital PHR functions generated value for Canadians and health systems by increasing health system productivity, and improving access to and quality of health care provided. As opportunities increased to interact and engage with health care providers via PHR functions, the marginal value generated by utilization of PHR functionalities also increased. Web-based prescription renewal generated the largest share of the total current value from the patient perspective. From the health systems perspective, Canadians’ ability to view their information on the Web was the largest value share. If PHRs were to be implemented with more integrated virtual care services, the value generated from populations with chronic illnesses such as severe and persistent mental illness and diabetes could amount to between Can $800 million and Can $1 billion per year across Canadian health systems.ConclusionsPHRs with higher interactivity could yield substantial potential value from wider implementation in Canada and increased adoption rates in certain target groups—namely, high-frequency health system users and their caregivers. Further research is needed to tie PHR use to health outcomes across PHR functions, care settings, and patient populations.

Intelligent Health Diagnosis Technique Exploiting Automatic Ontology Generation and Web-Based Personal Health Record Services

Growing interest in healthcare has promoted the use of symptom checkers, which are online health applications that provide diagnostic information on users' health. However, their diagnostic accuracy remains low because the existing symptom checkers rely on manually constructed knowledge models through labor-intensive processes or perform diagnoses based on simple pairwise relationships between diseases and symptoms without considering personal health conditions. In this paper, we propose an intelligent health diagnosis technique that exploits automatically generated ontology and Web-based personal health record services. The proposed technique first automatically generates a human disease diagnosis ontology by exploiting two well-established ontologies for diseases and symptoms: a large-scale medical bibliographic database and an open biomedical repository. When a user enters the symptom-based queries, possible diagnoses are identified by analyzing the user's queries and their health record data via semantic inferences of the automatically generated ontology. Subsequently, the ranked diagnostic results are provided to the user via ranking methods that consider the user's symptoms, personal health attributes, and multi-level diagnosis. The proposed technique also provides the user's diagnostic progress information, which can be used to track or monitor the progress of diseases by considering changes in symptoms over time. The proposed technique was evaluated through a comparison with the existing well-known symptom checkers and other related approaches. The evaluation results show that the proposed technique can feasibly help to improve diagnostic accuracy and deliver appropriate diagnostic information for healthcare action by users.

Utilizing a Prototype Patient-Controlled Electronic Health Record in Germany: Qualitative Analysis of User-Reported Perceptions and Perspectives.

BackgroundPersonal electronic health records (PHR) are considered instrumental in improving health care quality and efficiency, enhancing communication between all parties involved and strengthening the patient’s role. Technical architectures, data privacy, and applicability issues have been discussed for many years. Nevertheless, nationwide implementation of a PHR is still pending in Germany despite legal regulations provided by the eHealth Act passed in 2015. Within the information technology for patient-oriented care project funded by the Federal Ministry of Education and Research (2012-2017), a Web-based personal electronic health record prototype (PEPA) was developed enabling patient-controlled information exchange across different care settings. Gastrointestinal cancer patients and general practitioners utilized PEPA during a 3-month trial period. Both patients and physicians authorized by them could view PEPA content online and upload or download files.ObjectiveThis paper aims to outline findings of the posttrial qualitative study carried out to evaluate user-reported experiences, perceptions, and perspectives, focusing on their interpretation of PEPA beyond technical usability and views on a future nationwide implementation.MethodsData were collected through semistructured guide-based interviews with 11 patients and 3 physicians (N=14). Participants were asked to share experiences, views of perceived implications, and perspectives towards nationwide implementation. Further data were generated through free-text fields in a subsequent study-specific patient questionnaire and researcher’s notes. Data were pseudonymized, audiotaped, and transcribed verbatim. Content analysis was performed through the Framework Analysis approach. All qualitative data were systemized by using MAXQDA Analytics PRO 12 (Rel.12.3.1). Additionally, participant characteristics were analyzed descriptively using IBM SPSS Statistics Version 24.ResultsUsers interpreted PEPA as a central medium containing digital chronological health-related documentation that simplifies information sharing across care settings. While patients consider the implementation of PEPA in Germany in the near future, physicians are more hesitant. Both groups believe in PEPA’s concept, but share awareness of concerns about data privacy and older or impaired people’s abilities to manage online records. Patients perceive benefits for involvement in treatment processes and continuity of care but worry about financing and the implementation of functionally reduced versions. Physicians consider integration into primary systems critical for interoperability but anticipate technical challenges, as well as resistance from older patients and colleagues. They omit clear positioning regarding PEPA’s potential incremental value for health care organizations or the provider-patient relationship.ConclusionsDigitalization in German health care will continue to bring change, both organizational and in the physician-patient relationship. Patients endorse and expect a nationwide PEPA implementation, anticipating various benefits. Decision makers and providers need to contribute to closing modernization gaps by committing to new concepts and by invigorating transformed roles.

Variations in the Usability of Independent Web-Based Personal Health Records

ABSTRACTPrevious research on personal health records (PHRs) has focused on applications that are “tethered” to a specific electronic health record (EHR). However, there is a gap in research on the usability of unaffiliated, independent PHRs, as well as research on college-aged PHR users. Therefore, we performed a comparative usability study with 18 college-aged participants on three popular, freely available, independent PHRs. Participants completed the same six tasks in three different PHRs. Dependent variables included task time, mouse movement, mouse clicks, keystrokes, errors, and user satisfaction ratings based on the Computer System Usability Questionnaire (CSUQ). Analysis of variance (ANOVA) was used to determine the significance in the difference of the means for each dependent variable. Results showed statistically significant differences in CSUQ survey categories, errors, and keystrokes. Results supported one of the three PHRs (“System A”) as having better usability than its tested counterparts; participants scored best in System A of all categories of the CSUQ, and used System A with less mouse movement, commission errors, and keystrokes than the other PHRs.

A Comparative Usability Study of Independent Web-Based Personal Health Records

Previous research on personal health records (PHRs) has focused on applications that are “tethered” to a specific electronic health record (EHR). However, there is a gap in research on the usability of unaffiliated, independent PHRs, as well as research on college-aged PHR users. Therefore, we performed a comparative usability study with 18 college-aged participants on three popular, freely available, independent PHRs. We chose a within-subject design to allow for comparative feedback from each participant in the post-experiment interview. In order to control for a learning effect between PHRs potentially affecting the usability performance measures, the order that participants used the PHRs was randomized across participants. We used analysis of variance (ANOVA) to determine if there were statistically significant differences in the usability measures. Based on variability of PHR use and design reported in previous research, we hypothesized that there would be a significant difference for each of the measures previously described and that one PHR would be the most usable product based on these measures. This hypothesis is based on the PHR’s extensive resources and company history. Participants completed the same six tasks in three different PHRs. Dependent variables included task time, mouse movement, mouse clicks, keystrokes, errors, and user satisfaction ratings based on the Computer System Usability Questionnaire (CSUQ). Analysis of variance (ANOVA) was used to determine the significance in the difference of the means for each dependent variable. Results showed statistically significant differences in CSUQ survey categories, errors, and keystrokes. Results supported one of the three PHRs as having better usability than its tested counterparts. While the initial purpose of this study was comparative usability testing of PHRs for college-aged students, the study provided other insights as well. Similar to other usability studies found in the literature review, the study used multiple methods, including objective task metrics, a survey, and an interview to solicit feedback on the systems. This provides a new addition to the literature in that it analyzes the usability of a system with a new user group and completed a comparative analysis of three leading Web-based, untethered PHRs. The initial hypothesis that there would be a significant difference in usability for each of the dependent measures and that one PHR would have better usability based on these measures was partially supported by the results. While not all of the criteria had statistically significant results for the three different systems, such as task time, mouse movement, mouse clicks, and interface quality, many of the measures did have significant differences in their means, and one of the PHRs had the best results in the majority of metrics analyzed. Though one PHR seemed to more usable than the other systems, it does not imply that this PHR is without error. There are still improvements that could be made to enhance the usability of the system. For example, several participants commented on how they liked the interface of one of the competing PHRs. Several participants also commented that some of the drop-downs limit the options and are not representative of the information they were trying to enter. Expanded dropdowns or typing options could be added to improve this. As found in the a different study, there are still barriers to the adoption of the PHR that was found to be most usable. Using the survey and open-ended survey results as a guide to improvement, the PHR that was found to be most usable in our study has the potential to further improve its usability.

Cross-sectoral cancer care: views from patients and health care professionals regarding a personal electronic health record

Cross-sectoral cancer care is complex and involves collaboration from health care professionals (HCPs) across multiple sectors. However, when health information exchange (HIE) is not adequate, it results in impeded coordination and continuity of care. A web-based personal electronic health record (PEPA) under patients' control, providing access to personal health data across sectors, is being developed. Aim of this study was to explore perceived benefits and concerns. Using a qualitative approach, 10 focus groups were performed collecting views of three prospective user groups: patients with colorectal cancer (n=12), physicians (n=17) and other HCPs (n=16). Representatives from different health sectors across the Rhine-Neckar region (Germany) participated. Data were audio- and videotaped, transcribed verbatim and thematically analysed. Our study shows that patients and HCPs expected a PEPA to enhance cross-sectoral availability of information, cross-sectoral cooperation and facilitate data management. Quality of cancer care was expected to be improved. Concerns were expressed in terms of data protection and data security. Concepts like a PEPA offer the chance to support HIE and avoid gaps of information in cross-sectoral cancer care. This may lead to improvements in coordination and continuity of care. Issues concerning data security and protection have to be addressed.

Enablers for Patients to Adopt Web-Based Personal Health Records (PHR)

This study analyzed what are enablers to adopt web-based Personal Health Records (PHR) from patients' perspective while many studies are conducted from providers' perspective. Patients may consider Perceived Value of Information, Perceived Worthwhileness of Searching, Privacy, Information Trust, and Security before adopting web-based PHR. By using HINTS (Health Information National Trends Survey), this study found out that Perceived Value of Information is the most critical enabler for patients to adopt web-based PHR. Privacy, Information Trust, and Security are also enablers to adopt web-based PHR. But, Perceived Worthwhileness of Searching is not statistically significant to explain adoption of web-based PHR. However, Perceived Value of Information is strong antecedent of Perceived Worthwhileness of Searching. Based on this study, patients are more likely to adopt web-based PHR when they realize that web-based PHR provides valuable and reliable information with protecting privacy and security.

Between personal health record website and portable medical health record: an online data transformation interface.

Web-based Personal health record recently brought out the whole world attention by two famous vendors involved in this battle field. The convenience and ubiquity of user-end data management influence the user's will greatly. This study is based on the idea of easy data transfer from the portal device to the web-based personal health record, and further more this can promote the use of personal health record and assist more people manage their own health.

Client perceptions of the mental health engagement network: a qualitative analysis of an electronic personal health record

BackgroundInformation technologies such as websites, mobile phone applications, and virtual reality programs have been shown to deliver innovative and effective treatments for mental illness. Much of the research studying electronic mental health interventions focuses on symptom reduction; however, to facilitate the implementation of electronic interventions in usual mental health care, it is also important to investigate the perceptions of clients who will be using the technologies. To this end, a qualitative analysis of focus group discussions regarding the Mental Health Engagement Network, a web-based personal health record and smartphone intervention, is presented here.MethodsIndividuals living in the community with a mood or psychotic disorder (n = 394) were provided with a smartphone and access to an electronic personal health record, the Lawson SMART Record, for 12 to 18 months to manage their mental health. This study employed a delayed-implementation design and obtained both quantitative and qualitative data through individual interviews and focus group sessions. Participants had the opportunity to participate in voluntary focus group sessions at three points throughout the study to discuss their perceptions of the technologies. Qualitative data from 95 focus group participants were analysed using a thematic analysis.ResultsFour overarching themes emerged from focus group discussions: 1) Versatile functionality of the Lawson SMART Record and smartphone facilitated use; 2) Aspects of the technologies as barriers to use; 3) Use of the Mental health Engagement Network technologies resulted in perceived positive outcomes; 4) Future enhancement of the Lawson SMART Record and intervention is recommended.DiscussionThese qualitative data provide a valuable contribution to the understanding of how smarttechnologies can be integrated into usual mental health care. Smartphones are extremely portable andcommonplace in society. Therefore, clients can use these devices to manage and track mental health issuesin any place at almost any time without feeling stigmatized.ConclusionsAssessing clients’ perspectives regarding the use of smart technologies in mental health care provides an invaluable addition to the current literature. Qualitative findings support the feasibility of implementing a smartphone and electronic personal health record intervention with individuals who are living in the community and experiencing a mental illness, and provide considerations for future development and implementation.

Personal electronic health records: understanding user requirements and needs in chronic cancer care.

BackgroundThe integration of new information and communication technologies (ICTs) is becoming increasingly important in reorganizing health care. Adapting ICTs as supportive tools to users' needs and daily practices is vital for adoption and use.ObjectiveIn order to develop a Web-based personal electronic health record (PEPA), we explored user requirements and needs with regard to desired information and functions.MethodsA qualitative study across health care sectors and health professions was conducted in a regional health care setting in Germany. Overall, 10 semistructured focus groups were performed, collecting views of 3 prospective user groups: patients with colorectal cancer (n=12) and representatives from patient support groups (n=2), physicians (n=17), and non-medical HCPs (n=16). Data were audio- and videotaped, transcribed verbatim, and thematically analyzed using qualitative content analysis.ResultsFor both patients and HCPs, it was central to have a tool representing the chronology of illness and its care processes, for example, patients wanted to track their long-term laboratory findings (eg, tumor markers). Designing health information in a patient accessible way was highlighted as important. Users wanted to have general and tumor-specific health information available in a PEPA. Functions such as filtering information and adding information by patients (eg, on their well-being or electronic communication with HCPs via email) were discussed.ConclusionsIn order to develop a patient/user centered tool that is tailored to user needs, it is essential to address their perspectives. A challenge for implementation will be how to design PEPA’s health data in a patient accessible way. Adequate patient support and technical advice for users have to be addressed.

A Qualitative Study of How Patients with Type 2 Diabetes Use an Electronic Stand-Alone Personal Health Record

Patient use of personal health records (PHRs) to manage their health information has been proposed to enhance patient knowledge and empower patients to make changes in their self-care behaviors. However, there remains a gap in understanding about patients' actual PHR use behaviors. The purpose of this qualitative study was to explore how patients with type 2 diabetes used a PHR to manage their diabetes-related health information for self-care. Fifty-nine patients with type 2 diabetes were interviewed 3-6 months after receiving initial training on a free-of-charge, Web-based PHR. Interviews were audio-recorded, transcribed, and analyzed using an iterative process of in vivo coding, categorization, and theme development. Nine themes emerged, three of which expressed positive experiences: complete and accessible record; increased awareness; and behavioral changes. The remaining six themes expressed negative experiences: out of sight, out of mind; I would have used it if I were sicker; economic, infrastructure, and computer literacy barriers; lack of patient-provider engagement; double tracking; and privacy and security concerns. Despite some potential positive benefits resulting from PHR use, several barriers inhibited sustained and effective use over time. Provider and patient education about the benefits of PHR use and about the potential for filling in information gaps in the provider-based record is key to engage patients and stimulate PHR adoption and use.

Client Perceptions of the Mental Health Engagement Network: A Secondary Analysis of an Intervention Using Smartphones and Desktop Devices for Individuals Experiencing Mood or Psychotic Disorders in Canada.

BackgroundThe use of innovative technologies in mental health care has the potential to improve system efficiency, enhance quality of care, and increase patient engagement. The Mental Health Engagement Network (MHEN) project developed, delivered, and evaluated an interactive Web-based personal health record, the Lawson SMART Record (LSR), to assist mental health clients in managing their care and connecting with their care providers. This paper presents a secondary analysis of data collected in the MHEN project regarding clients’ perceptions of technology and the use of these technologies in their care.ObjectiveWe aimed to answer six questions: (1) What is the level of comfort with technology within a sample of individuals experiencing mood or psychotic disorders? (2) How easy to use and helpful are the MHEN technologies from the perspective of individuals experiencing a mental illness? (3) Are there differences in how helpful or useful individuals find the smartphone compared to the LSR? (4) Are there specific functions of MHEN technologies (eg, reminders for medications or appointments) that are more valued than others? (5) What are the other ways that individuals are using MHEN technologies in their daily lives? (6) How likely are individuals to be able to retain and maintain their smartphone?MethodsMental health clients aged 18-80 (N=400) and diagnosed with a mood or psychotic disorder were provided with a smartphone (iPhone 4S) and participating care providers (n=52) were provided with a tablet (iPad) in order to access and engage with the LSR. A delayed implementation design with mixed methods was used. Survey and interview data were collected over the course of 18 months through semistructured interviews conducted by experienced research assistants every 6 months post-implementation of the intervention. Paired t tests were used to determine differences between 6 and 12-month data for perceptions of the MHEN technologies. A paired t test was used to examine whether differences existed between perceptions of the smartphone and the LSR at 12 months post-implementation.ResultsDue to dropout or loss of contact, 394 out of 400 individuals completed the study. At the end of the study, 52 devices were lost or unusable. Prior to the intervention, participants reported being comfortable using technology. Perceptions of the MHEN technologies and their functions were generally positive. Positive perceptions of the smartphone increased over time (P=.002), while positive perceptions of the LSR decreased over time (P<.001).ConclusionsQuantitative and qualitative findings from this analysis demonstrated that these technologies positively impacted the lives of individuals experiencing severe mental illnesses and dispeled some of the myths regarding retention of technology among marginalized populations. This secondary analysis supported the acceptability of using mental health technologies within this population and provided considerations for future development.Trial RegistrationClinicalTrials.gov NCT01473550; http://clinicaltrials.gov/show/NCT01473550 (Archived by WebCite at http://www.webcitation.org/6SLNcoKb8).