Access To Personal Health Records Research Articles

Public Perceptions on Data Sharing: Comparing Attitudes in the US and UK

Summary: The past decade has seen a significant rise in ‘big data’ and artificial intelligence (AI) applications aiming to improve the quality, safety and efficiency of care. Yet, recent data breach and cybersecurity scandals have raised public awareness of data security and privacy risks. This study aimed to examine public perceptions towards data sharing, data access and the use of AI. Methods: A YouGov survey was conducted with nationally representative samples of citizens across the United Kingdom (UK; n=2,080) and United States (US; n=1,114). The survey queried respondents’ access to and perceived usefulness of Personal Health Records (PHR), willingness to share anonymous Personal Health Information (PHI), and attitudes towards the use of AI in healthcare. Findings: Respondents reported limited use of PHR in both countries. PHR access was particularly low in the UK (14.3%, 95% CI [12.8, 15.8]) compared to the US (44.5%, 95% CI [41.6, 47.4]). Apprehension towards sharing of PHI was higher in the US (23.4%, 95%CI [20.9, 25.9]), a largely privatised system, than in the UK (14.9%, 95%CI [13.4, 16.4]), a socialised, single-payer system, and results indicated concern amongst the public that data might not be protected from commercial end-use. Most respondents in both countries (58.2%, 95% CI [56.1, 60.3] in the UK; 51.8%, 95% CI [48.9, 54.7] in the US) were not happy to receive healthcare from AI applications, especially if without doctor or nurse support. Interpretation: Our findings indicate growing public concern around data sharing and the use of AI in healthcare. Without sufficient investment in public trust, data security and informed consent, patients may be deprived of access to novel digital solutions that could benefit their health. Funding Statement: This work was supported by the World Innovation Summit for Health (WISH) which is hosted by the Qatar Foundation. Declaration of Interests: The authors declare no conflicts of interest associated with this research. Ethics Approval Statement: The authors stated that ethics approval was not required for this study as all data was anonymous and in the public domain.

Use and Effects of Patient Access to Medical Records in General Practice Through a Personal Health Record in the Netherlands: Protocol for a Mixed-Methods Study.

BackgroundIn the Dutch health care system, general practitioners hold a central position. They store information from all health care providers who are involved with their patients in their electronic health records. Web-based access to the summary record in general practice through a personal health record (PHR) may increase patients’ insight into their medical conditions and help them to be involved in their care.ObjectiveWe describe the protocol that we will use to investigate the utilization of patients’ digital access to the summary of their medical records in general practice through a PHR and its effects on the involvement of patients in their care.MethodsWe will conduct a multilevel mixed-methods study in which the PHR and Web-based access to the summary record will be offered for 6 months to a random sample of 500 polypharmacy patients, 500 parents of children aged <4 years, and 500 adults who do not belong to the former two groups. At the patient level, a controlled before-after study will be conducted using surveys, and concurrently, qualitative data will be collected from focus group discussions, think-aloud observations, and semistructured interviews. At the general practice staff (GP staff) level, focus group discussions will be conducted at baseline and Q-methodology inquiries at the end of the study period. The primary outcomes at the patient level are barriers and facilitators for using the PHR and summary records and changes in taking an active role in decision making and care management and medication adherence. Outcomes at the GP staff level are attitudes before and opinions after the implementation of the intervention. Patient characteristics and changes in outcomes related to patient involvement during the study period will be compared between the users and nonusers of the intervention using chi-square tests and t tests. A thematic content analysis of the qualitative data will be performed, and the results will be used to interpret quantitative findings.ResultsEnrollment was completed in May 2017 and the possibility to view GP records through the PHR was implemented in December 2017. Data analysis is currently underway and the first results are expected to be submitted for publication in autumn 2019.ConclusionsWe expect that the findings of this study will be useful to health care providers and health care organizations that consider introducing the use of PHR and Web-based access to records and to those who have recently started using these.Trial RegistrationNetherlands Trial Registry NTR6395; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6395 (Archived by WebCite at http://www.webcitation.org/71nc8jzwM)Registered Report IdentifierRR1-10.2196/10193

Uncovering a Role for Electronic Personal Health Records in Reducing Disparities in Sexually Transmitted Infection Rates Among Students at a Predominantly African American University: Mixed-Methods Study.

BackgroundBlack youth continue to bear an overwhelming proportion of the United States sexually transmitted infection (STI) burden, including HIV. Several studies on web-based and mobile health (mHealth) STI interventions have focused on characterizing strategies to improve HIV-related prevention and treatment interventions, risk communication, and stigma among men who have sex with men (MSM), people who use substances, and adolescent populations. The Electronic Sexual Health Information Notification and Education (eSHINE) Study was an exploratory mixed-methods study among students at a historically black university exploring perceptions on facilitating STI testing conversations with partners using electronic personal health records (PHRs).ObjectiveThe purpose of this paper is to use eSHINE Study results to describe perceived impacts of electronic PHRs on facilitating STI testing discussions between sexual partners.MethodsSemistructured focus groups and individual in-depth interviews were conducted on a heterogeneous sample of students (n=35) between May and July 2014. Qualitative phase findings guided development of an online survey instrument for quantitative phase data collection. Online surveys were conducted using a convenience sample of students (n=354) between January and May 2015. Online survey items collected demographic information, sexual behaviors, beliefs and practices surrounding STI testing communication between partners, and beliefs about the impact of electronic PHR access on facilitating these discussions with partners. Chi-square analysis was performed to assess gender differences across quantitative measures. A Wilcoxon signed rank sum test was used to test the null hypothesis that electronic PHRs are believed to have no effect on the timing of dyadic STI health communication.ResultsParticipants described multiple individual and dyadic-level factors that inhibit initiating discussions about STI testing and test results with partners. Electronic PHRs were believed to improve ability to initiate conversations and confidence in STI screening information shared by partners. Among online survey participants, men were more likely to believe electronic PHRs make it easier to facilitate STI talks with potential partners (59.9% vs 51.9%; χ2=3.93, P=.05). The Wilcoxon signed-rank test results indicate significant increases in perceived discussion timing before sex with electronic PHR access (61.0% vs 40.4%; P<.001).ConclusionsFindings suggest that electronic PHR access in STI screening settings among similar populations of Black youth may improve both motivation and personal agency for initiating dyadic STI health communication. Results from this study will likely inform novel interventions that use access to electronic PHRs to stimulate important health-related discussions between sexual partners. Moving forward requires studying strategies for implementing interventions that leverage electronic PHRs to create new sexual health communication channels with providers, peers, and family among black youth.

The Use of Electronic Personal Health Records to Improve Medication Adherence and Patient Engagement: A Randomized Study of Non-valvular Atrial Fibrillation Patients.

Embolic stroke is a major complication of atrial fibrillation (AF) that frequently results in disability or death. The administration of oral anticoagulation can reduce stroke risk in AF patients; however, medication non-adherence can eliminate this benefit. To date, reported patient adherence rates to oral anticoagulation regimens vary. The objective of the current study was to examine the impact of medication-specific education delivered via a personal health record (PHR) system on medication adherence. A randomized, prospective study was conducted from February 2014 to June 2014 at Parkview Health, a not-for-profit, community-based health care clinic that serves a northeastern Indiana population of more than 820,000. AF patients receiving dabigatran (Pradaxa®; Boehringer Ingelheim GmbH, Ingelheim am Rhein, Germany) to prevent stroke participated in this study. The study participants were predominantly Caucasian males over 65 years of age who were educated, insured, and living above the poverty level. Patients were allowed to view online, download, and transmit health information via a PHR. The intervention group received PHR training and dabigatran education via the PHR. The control group received standard care and PHR access without training. A longitudinal survey pertaining to medication knowledge, medication adherence, and patient engagement was administered at baseline and at the end of the study. Medication-dispensing data collected from pharmacy refill prescriptions were used for calculating the medication possession ratio (MPR). Ninety patients were included in this study, and were randomly assigned to either the intervention group (n = 46) or the control group (n = 44). All participants completed the baseline survey, and 95.6% of patients finished the follow-up survey. The mean score for knowledge increased significantly in the intervention group (from 3.77 to 4.23, p = 0.005), but not in the control group (from 3.70 to 3.95, p = 0.72).The MPR was significantly higher in the intervention group (97.47% vs. 87.67%, p = 0.001). Both groups had similar levels of improvement in Patient Activation Measure scores (from 63.0 to 65.8, p = 0.078 vs. from 63.1 to 63.6, p = 0.814). Patients who used the PHR achieved greater medication knowledge, resulting in improved medication adherence. To our knowledge, no published randomized trial has reported on the use of PHRs to improve medication adherence and knowledge. This study is the first to demonstrate a positive impact on anticoagulation adherence with PHR use.

Smartphone Use Among Postpartum Women and Implications for Personal Health Record Utilization.

Personal health records (PHRs) have the potential to improve incomplete health records. However, internet access through traditional methods may be limited for populations most at risk for fragmented care. A convenience sample of postpartum women at a community hospital and tertiary-care academic center in New York City completed a self-administered survey. Most (75.2%, n = 200) women approached participated. The majority (70.0%) were Latina, 53.5% were Spanish speakers, 23.4% were uninsured, and 41.6% were publicly insured. Smartphone ownership (85.6%) including a data plan (80.0%) was high. While insurance and educational level were associated with decreased odds of internet access at home, access via cellphone only differed by age. Nearly all (94%) women wanted PHR access and interest only differed by language. Even the minority (20.0%) of women with concerns, reported high (93.8%) interest. High smartphone ownership, use of phone for internet access, and interest in PHR access, suggest the potential of optimizing PHR use via mobile technologies.

Design of secure access control scheme for personal health record‐based cloud healthcare service

AbstractWith the development of information technology and medical technology, many developed countries have established organizations to develop electronic medical standards in response to apply the development of technology information, and they gradually develop the emerging patterns of personal health records (PHRs). PHR can integrate different kinds of health information and can offer the integrity and accuracy of personal health and medical records. Using the cloud computing environment to implement the PHR system; we can decrease the infrastructure management costs, adjusting the dynamic resources immediately on the basis of the changes of client's demand and other advantages. To assure that the security information in cloud computing environment is important to users, this paper provides efficient and safe access managing mechanism to solve PHR implement on cloud environment's security problem, avoiding possibility that the information security being threatened in the Cloud may lead to the collapse of medical care, patients' stolen data, loss of personal privacy, and financial or other serious consequences. This paper presents bilinear pairing that was constructed in the cloud computing environment of the new PHR access control mechanism, which suited for deploying a large‐scale and multiple identities of users, and users are safe and efficient in accessing the PHR information. Copyright © 2014 John Wiley &amp; Sons, Ltd.

Personal health records, symptoms, uncertainty, and mood in brain tumor patients

The advantages of patient access to the electronic medical record (EMR) through integrated personal health records (PHR) may be substantial, and foremost is the enhanced information flow between patient and practitioner. Because this is an emerging technology, the actualized benefits to complex patient groups remain largely unknown. MD Anderson Cancer Center provides web-based PHR portal access to the EMR including clinic notes, MRI results, and pathology reports. This study sought to evaluate PHR use by glioma patients. Cross-sectional survey and PHR-derived user data from 186 patients were analyzed using descriptive and inferential statistics. Logistic regression assessed disparities between users and nonusers. Dependence of PHR access on treatment stage was tested through linear regression. Path analysis evaluated PHR access, disease-related uncertainty, symptom experience, and mood. Patients averaged 44.2 years (range 19y-80y), 77% had a high-grade tumor, and 60% had accessed PHR at least one time (range 0-126). Strongest predictors of access included education level (college level or higher), low performance status, middle income, and in-state residency. Patients undergoing treatment were more active users. PHR access was associated with lower disease-related uncertainty and lower symptom severity. Mood was not directly related to PHR use but mediated an association between symptom severity and uncertainty. While many reports presume better disease and symptom understanding for patients with EMR access, this study is the first to correlate PHR use to lower patient uncertainty levels. Early examination of PHR provides an important basis for critical evaluation and optimization to better structure this benefit for brain tumor patients.

Tablet computers for hospitalized patients: A pilot study to improve inpatient engagement

Inadequate patient engagement in hospital care inhibits high-quality care and successful transitions to home. Tablet computers may provide opportunities to engage patients, particularly during inactive times between provider visits, tests, and treatments, by providing interactive health education modules as well as access to their personal health record (PHR). We conducted a pilot project to explore inpatient satisfaction with bedside tablets and barriers to usability. Additionally, we evaluated use of these devices to deliver 2 specific Web-based programs: (1) an interactive video to improve inpatient education about hospital safety, and (2) PHR access to promote inpatient engagement in discharge planning. We enrolled 30 patients; 17 (60%) were aged 40 years or older, 17 (60%) were women, 17 (60%) owned smartphones, and 6 (22%) owned tablet computers. Twenty-seven (90%) reported high overall satisfaction with the device, and 26 (87%) required ≤ 30 minutes for basic orientation (70% required ≤ 15 minutes). Twenty-five (83%) independently completed an interactive educational module on hospital patient safety. Twenty-one (70%) accessed their personal health record (PHR) to view their medication list, verify scheduled appointments, or send a message to their primary care physician. Next steps include education on high-risk medications, assessment of discharge barriers, and training clinical staff (such as respiratory therapists, registered nurses, or nurse practitioners) to deliver tablet interventions.

Secure Dynamic Access Control Scheme of PHR in Cloud Computing

With the development of information technology and medical technology, medical information has been developed from traditional paper records into electronic medical records, which have now been widely applied. The new-style medical information exchange system "personal health records (PHR)" is gradually developed. PHR is a kind of health records maintained and recorded by individuals. An ideal personal health record could integrate personal medical information from different sources and provide complete and correct personal health and medical summary through the Internet or portable media under the requirements of security and privacy. A lot of personal health records are being utilized. The patient-centered PHR information exchange system allows the public autonomously maintain and manage personal health records. Such management is convenient for storing, accessing, and sharing personal medical records. With the emergence of Cloud computing, PHR service has been transferred to storing data into Cloud servers that the resources could be flexibly utilized and the operation cost can be reduced. Nevertheless, patients would face privacy problem when storing PHR data into Cloud. Besides, it requires a secure protection scheme to encrypt the medical records of each patient for storing PHR into Cloud server. In the encryption process, it would be a challenge to achieve accurately accessing to medical records and corresponding to flexibility and efficiency. A new PHR access control scheme under Cloud computing environments is proposed in this study. With Lagrange interpolation polynomial to establish a secure and effective PHR information access scheme, it allows to accurately access to PHR with security and is suitable for enormous multi-users. Moreover, this scheme also dynamically supports multi-users in Cloud computing environments with personal privacy and offers legal authorities to access to PHR. From security and effectiveness analyses, the proposed PHR access scheme in Cloud computing environments is proven flexible and secure and could effectively correspond to real-time appending and deleting user access authorization and appending and revising PHR records.

Patient Interest in Sharing Personal Health Record Information

Electronic personal health record (PHR) systems are proliferating but largely have not realized their potential for enhancing communication among patients and their network of care providers. To explore preferences about sharing electronic health information among users of the U.S. Department of Veterans Affairs (VA) PHR system, My HealtheVet. Web-based survey of a convenience sample. My HealtheVet Web site from 7 July through 4 October 2010. 18 471 users of My HealtheVet. Interest in shared PHR access and preferences about who would receive access, the information that would be shared, and the activities that users would delegate. Survey respondents were predominantly men (92%) and aged 50 to 64 years (51%) or 65 years or older (39%); approximately 39% reported poor or fair health status. Almost 4 of 5 respondents (79%) were interested in sharing access to their PHR with someone outside of their health system (62% with a spouse or partner, 23% with a child, 15% with another family member, and 25% with a non-VA health care provider). Among those who selected a family member other than a spouse or partner, 47% lived apart from the specified person. Preferences about degree of access varied on the basis of the type of information being shared, the type of activity being performed, and the respondent's relationship with the selected person. The survey completion rate was 40.8%. Results might not be generalizable to all My HealtheVet users. In a large survey of PHR users in the VA system, most respondents were interested in sharing access to their electronic health information with caregivers and non-VA providers. Existing and evolving PHR systems should explore secure mechanisms for shared PHR access to improve information exchange among patients and the multiple persons involved in their health care. Veterans Health Administration and The Robert Wood Johnson Foundation Clinical Scholars Program.