Online Personal Health Record Research Articles

Survey on Personal Health Record using Cloud Computing

As a result of using an online personal health record (PHR), individuals may save, access, and share their private health information in a more efficient manner. To take advantage of the cloud's scalability and lower operational costs, PHR service providers should shift their apps and data to the cloud. In order to prevent unauthorised access to their personal health records, patients must encrypt their PHR data before storing it on cloud servers. Access to Personal Health Records (PHRs) can be challenging to scale and environmentally friendly under encryption. PHRs must be encrypted in such a way that the number of persons with access to the data does not become an issue. An important consideration when there are several users of a PHR device and each user has access to a unique set of encryption keys is the ease with which the keys may be distributed to each user. For the time being, management information can only be accessed through cryptographic methods for single-proprietor companies. A novel cloud-based solution to PHR management is proposed in this study, as explained above. Using ABE methods to encrypt each patient's Personal Health Record (PHR) data enables for granular and scalable access control for PHRs. Additionally, our approach provides green and on-call revocation of individual access credentials, as well as break-glass access in the event of an emergency. Keywords: Personal health records, cloud computing, Electronic Health Record, fine-grained access control.

Usability and perceived usefulness of patient-centered medication reconciliation using a personalized health record: a multicenter cross-sectional study

BackgroundAdoption of a personal health record (PHR) depends on its usability and perceived usefulness. Therefore, we aimed to assess the usability and perceived usefulness of an online PHR used for medication reconciliation and to assess the association between patient-, clinical-, hospital-, and ICT-related factors and the usability and perceived usefulness at both the in- and outpatient clinics.MethodsA multicenter cross-sectional study was conducted with patients with either an outpatient visit (rheumatology ward) or planned admission in the hospital (cardiology, neurology, internal medicine or pulmonary wards). All patients received an invitation to update their medication list in the PHR 2 weeks prior to their appointment. One month after the hospital visit, PHR-users were asked to rate usability (using the System Usability Scale (SUS)) and perceived usefulness on a 5-point Likert scale. The usability and perceived usefulness were classified according to the adjective rating scale of Bangor et al. The usability was furthermore dichotomized in the categories: low (SUS between 0 and 51) and good (SUS 51–100) usability. Associations between patient-, clinical-, hospital-, and ICT-related factors and the usability and perceived usefulness were analysed.Results255 of the 743 invited PHR-users completed the questionnaire. 78% inpatients and 83% outpatients indicated that usability of the PHR was good. There were no significant association between patient-, clinical-, hospital-, and ICT-related factors and the usability of the PHR. The majority of the patients (57% inpatients and 67% outpatients) classified perceived usefulness of the PHR as good, excellent, or best imaginable. Outpatients who also used the PHR for other drug related purposes reported a higher perceived usefulness (adjusted odds ratio 20.0; 95% confidence interval 2.36–170). Besides that, there was no significant association between patient-, clinical-, hospital-, and ICT-related factors and the perceived usefulness of the PHR.ConclusionsThe majority of the patients indicated that the PHR for medication reconciliation was useful and easy to use, but there is still room for improvement. To improve the intervention, further research should explore patients’ barriers and facilitators of using a PHR for medication reconciliation.

Cost-Utility of an Online Education Platform and Diabetes Personal Health Record: Analysis Over Ten Years.

My Diabetes My Way (MDMW) is Scotland's interactive website and mobile app for people with diabetes and their caregivers. It contains multimedia resources for diabetes education and offers access to electronic personal health records. This study aims to assess the cost-utility of MDMW compared with routine diabetes care in people with type 2 diabetes who do not use insulin. Analysis used the United Kingdom Prospective Diabetes Study (UKPDS) Outcomes Model 2. Clinical parameters of MDMW users (n = 2576) were compared with a matched cohort of individuals receiving routine care alone (n = 11 628). Matching criteria: age, diabetes duration, sex, and socioeconomic status. Impact on life expectancy, quality-adjusted life years (QALYs), and costs of treatment and complications were simulated over ten years, including a 10% sensitivity analysis. MDMW cohort: 1670 (64.8%) men; average age 64.3 years; duration of diabetes 5.5 years. 906 (35.2%) women: average age 61.6 years; duration 4.7 years. The cumulative mean QALY (95% CI) gain: 0.054 (0.044-0.062) years. Mean difference in cost: -£118.72 (-£150.16 to -£54.16) over ten years. Increasing MDMW costs (10%): -£50.49 (-£82.24-£14.14). Decreasing MDMW costs (10%): -£186.95 (-£218.53 to -£122.51). MDMW is "dominant" over usual care (cost-saving and life improving) in supporting self-management in people with type 2 diabetes not treated with insulin. Wider use may result in significant cost savings through delay or reduction of long-term complications and improved QALYs in Scotland and other countries. MDMW may be among the most cost-effective interventions currently available to support diabetes.

A comparison between medication reconciliation by a pharmacy technician and the use of an online personal health record by patients for identifying medication discrepancies in patients’ drug lists prior to elective admissions

AimMedication discrepancies (MDs), defined as unexplained differences among medication regimens, cause important public health problems with clinical and economic consequences. Medication reconciliation (MR) reduces the risk of MDs, but is time consuming and its success relies on the quality of different information sources. Online personalized health records (PHRs) may overcome these drawbacks. Therefore, the aim of this study is to determine the level of agreement of identified MDs between traditional MR and an online PHR and the correctness of the identified MDs with a PHR. MethodsA prospective cohort study was conducted at the cardiology, neurology, internal medicine and pulmonary department of the Amphia Hospital, the Netherlands. Two weeks prior to a planned admission all patients received an invitation from a PHR to update their medication file derived from the Nationwide Medication Record System (NMRS). At admission MR was performed with all by a pharmacy technician, who created the best possible medication history (BPMH) based on the NMRS data and an interview. MDs were determined as discrepancies between the available information from the NMRS and the input and alterations patients or pharmacy technician made. The number, correctness of patients’ alterations, type and severity of identified MDs were analysed. ResultsOf 488 patients approached, 155 (31.8 %) patients who both used the PHR and had received MR were included. The mean number of MDs identified with MR and PHR was 6.2 (SD 4.3) and 4.7 (SD 3.7), respectively. 82.1 % of the drug information noted by the patient in the PHR was correct compared to the BPMH and 98.6 % had no clinically relevant differences between the lists. ConclusionPatients who used an online PHR can relatively accurately record a list of their medication. Further research is required to explore the level of agreement and the correctness of a PHR in other (larger) hospital(departments).

Examining attitudes toward and ability to interact with an online personal health record: A case study in Saudi Arabia

Objective: This study examined the ability for adults from a developing country to use a personal health record (PHR) to perform health-management tasks. The effects of gender differences as well as differences in attitudes about using the internet to manage health prior to and after exposure to the PHR were also investigated.Methods: A simulation of a PHR based on a well-established U.S. online patient portal was designed and tailored for this particular study population. Two hundred and three adults with a mean age of 40.9 years were recruited from various areas in Saudi Arabia and asked to perform seven common health-management tasks of varying degrees of difficulty. Their electronic health literacy and health numeracy, as well as their attitudes about using online health systems for managing their health prior to and following their interaction with the PHR, were assessed using questionnaires.Results: After controlling for education, perceived health status, and comfort using the internet, electronic health literacy and health numeracy were still found to be significant predictors of participants’ task performance, but only for the more challenging health-management tasks. No important differences based on gender were found. Exposure to the PHR significantly increased the acceptability of using the internet for managing their health.Conclusions: The change in attitudes following interaction with the PHR suggests that many adults in this society could benefit from these electronic health systems, including females who, due to cultural considerations, may desire greater control in managing their health. However, the importance of electronic health literacy and health numeracy suggests the need for designs that minimize the impact of these factors for successful performance of health-management tasks.

Comparison of health care-related social media and Internet usage between patients treated with curative and palliative intent.

173 Background: Cancer patients (pts) are increasingly searching online for information and support. Online resource usage and preferences may differ between patients treated with curative versus palliative intent. Methods: Cancer pts completed a cross-sectional survey at Princess Margaret Cancer Centre, assessing their usage and perceptions of social media and the internet with regards to their cancer. Associations between patients’ responses and treatment intent were evaluated univariably (t-tests, chi-squared tests) and multivariably (linear/logistic regression). Results: In a univariable analysis comparing 65 palliative pts (PALL) and 222 curative pts, PALL were more likely to be older (p < 0.001) and less likely to be currently employed or a student (p < 0.001); they were less likely to use the internet (91% vs. 97%, p = 0.03), social media (68% vs. 87%, p < 0.001), and used social media less frequently than curative patients (66% vs. 83%, p = 0.01). PALL were less likely to be interested in an online personal health record (62% vs 76%, p = 0.04) and more likely to indicate that they would not use online information (17% vs. 7%, p = 0.02), compared to curative pts. PALL were more likely to be unfamiliar with social media (20% vs. 7%, p = 0.01), to not know how to use social media (21% vs. 7%, p < 0.001), and to have difficulty finding information (14% vs. 5%, p = 0.03). However, no significant differences by intent were identified after adjustment in a multivariable analysis controlling for age. Conclusions: After the age differences between both groups were adjusted for, there were no significant differences in patients’ online activity nor their perceptions of the trustworthiness, utility, and role of social media, and the Internet. These similarities suggest that online resources for PALL can be developed simultaneously with curative pts.

The user experiences and clinical outcomes of an online personal health record to support self-management of bipolar disorder: A pretest-posttest pilot study

BackgroundSelf-management comprises knowledge, behavior, activities and resources providing people with bipolar disorder (BD) control over fluctuating mood and activity-patterns. The ‘Self-management and Dialogue in Bipolar Disorder’ project entailed the tailoring of an online personal health record (PHR) originally designed for the chronically ill to monitor condition and share information with their clinician to people with BD (PHR-BD). The aim of this study was to evaluate the feasibility, utility and user-experiences of participants with BD, relatives, and healthcare professionals who worked with the PHR-BD. MethodsPost-test online closed- and open ended questionnaires were used to collect information on utility, and user-experiences with PHR-BD. A pre-posttest design to evaluate clinical effects on quality of life, empowerment, symptom reduction, changes in mood and activity, and illness burden and severity at baseline and at 12-months follow-up. ResultsSixty-six participants with BD logged in at baseline. At study endpoint thirty-nine participants with BD, eleven professionals and one family caregiver filled out the evaluations. No significant differences in the clinical outcomes from baseline were found. Qualitative evaluations showed a frequent utility of the mood chart modules, improved communication between clinician and participant with BD and, increased insight in influencing factors of mood fluctuations. LimitationsSmall convenience sample, no controls. ConclusionsThe option to alternate the interface from a prospective to a retrospective mood chart , and integration with the personal crisis plan was considered to be of added value in self-managing BD. The findings of this study will guide the future implementation of the PHR-BD.

Engaging Patients in Decisions About Cancer Screening: Exploring the Decision Journey Through the Use of a Patient Portal

Engaging patients to make informed choices is paramount but difficult in busy practices. This study sought to engage patients outside the clinical setting to better understand how they approach cancer screening decisions, including their primary concerns and their preferences for finalizing their decision. Twelve primary care practices offering patients an online personal health record invited eligible patients to complete a 17-item online interactive module. Among 11,458 registered users, invitations to complete the module were sent to adults aged 50-74 years who were overdue for colorectal cancer screening and to women aged 40-49 years and men aged 55-69 who had not undergone a recent mammogram or prostate-specific antigen test, respectively. The module was started by 2,355 patients and completed by 903 patients. Most respondents (76.8%) knew they were eligible for screening. Preferred next steps were talking to the clinician (76.6%), reading/research (28.6%), and consulting trusted friends/family (16.4%). Priority topics included how much screening improves life expectancy, comparative test performance, and the prevalence/health risks of the cancer. Leading fears were getting cancer/delayed detection (79.2%), abnormal results (40.5%), and testing complications (39.1%), the last referring to false test results, medical complications, or unnecessary treatments. Men eligible for prostate-specific antigen screening were more likely than women eligible for mammography to express concerns about testing complications and to prioritize weighing pros and cons over gut feelings (p<0.05). Although this sample was predisposed to screening, most patients wanted help in finalizing their decision. Many wanted to weigh the pros and cons and expressed fears of potential harms from screening. Understanding how patients approach decisions may help design more effective engagement strategies.

M2-ABKS: Attribute-Based Multi-Keyword Search over Encrypted Personal Health Records in Multi-Owner Setting.

Online personal health record (PHR) is more inclined to shift data storage and search operations to cloud server so as to enjoy the elastic resources and lessen computational burden in cloud storage. As multiple patients' data is always stored in the cloud server simultaneously, it is a challenge to guarantee the confidentiality of PHR data and allow data users to search encrypted data in an efficient and privacy-preserving way. To this end, we design a secure cryptographic primitive called as attribute-based multi-keyword search over encrypted personal health records in multi-owner setting to support both fine-grained access control and multi-keyword search via Ciphertext-Policy Attribute-Based Encryption. Formal security analysis proves our scheme is selectively secure against chosen-keyword attack. As a further contribution, we conduct empirical experiments over real-world dataset to show its feasibility and practicality in a broad range of actual scenarios without incurring additional computational burden.

The Association of Graph Literacy With Use of and Skills Using an Online Personal Health Record in Outpatient Veterans

Personal health records (PHRs) are intended to increase patients’ access to and ownership over their health care information for self-management purposes. The purpose of this study was to determine the association of graph literacy with adoption of an online PHR and, among adopters with self-reported skills, the frequency of use and intent to return to use the PHR . We conducted a cross-sectional survey of veterans receiving outpatient care. We measured health literacy, numeracy, graph literacy, and Internet and PHR adoption and use. We compared subgroups of veterans using analyses of covariance. We used hierarchical logistic regression models to estimate the effects of the literacy variables on PHR use. A total of 600 veterans (age = 22–94) participated in the survey. After we adjusted for known covariates, we found that adopters of a PHR were more likely to demonstrate higher health and graph literacy than nonadopters. Among PHR adopters, self-reported frequent and skillful users were more likely to have higher graph literacy than lower frequency and less skillful users. Adopters with higher intentions to return to use the PHR were more likely to show lower graph literacy than those less likely to return to use the PHR. Inadequate graph literacy was associated with lower adoption of a PHR and, among users, with lower self-reported frequent use and skills . As PHR use becomes more widespread, stakeholders will need to consider patients’ levels of graph literacy when implementing PHRs.

A vision for using online portals for surveillance of patient-centered communication in cancer care

The Veterans Health Administration (VHA) is charged with providing high-quality health care, not only in terms of technical competence but also with regard to patient-centered care experiences. Patient-centered coordination of care and communication are especially important in cancer care, as deficiencies in these areas have been implicated in many cases of delayed cancer diagnosis and treatment. Additionally, because cancer care facilities are concentrated within the VHA system, geographical and system-level barriers may present prominent obstacles to quality care. Systematic assessment of patient-centered communication (PCC) may help identify both individual veterans who are at risk of suboptimal care and opportunities for quality improvement initiatives at the service, facility, or system-wide level. In this manuscript, we describe our vision to implement an assessment of PCC through patient self-report to improve the quality of cancer care and other health services in the VHA. We outline a possible strategy to assess PCC that leverages the VHA's existing initiative to promote use of an online personal health record for veterans (MyHealtheVet). Questionnaires administered periodically or following specific episodes of care can be targeted to assess PCC in cancer care. Assessment of PCC can also be tied to clinical and administrative data for more robust analysis of patient outcomes. Ultimately, the goal of any assessment of PCC is to gather valid, actionable data that can assist VHA clinicians and staff with providing the best possible care for veterans with cancer.

Role of nurse practitioners in encouraging use of personal health records.

With increased mobility, it is important that individuals keep their own personal health records (PHRs). Nurse practitioners are encouraged to assume greater responsibility for PHR adoption and recognize the key role they play in recommending PHR use. This article also briefly discusses college students' perceptions of their exposure to online PHRs.

Internet Use Among Veterans With Severe Mental Illness

Internet Use Among Veterans With Severe Mental Illness

Increasing Patient Engagement: Patients’ Responses to Viewing Problem Lists Online

To characterize the opinions, emotions, and actions taken by patients who viewed their electronic problem list via an online personal health record (PHR). An online survey of patients who viewed their problem lists, as maintained by their healthcare provider, in a web-based PHR linked to an electronic health record for the first time. A total 3,649 patients completed the survey, yielding a response rate of 42.1%. Patient attitudes towards the problem list function were positive overall, with 90.4% rating it at least somewhat useful and 86.7% reporting they would probably or definitely use it again. Nearly half (45.6%) of patients identified at least one major or minor problem missing from their list. After viewing the list, 56.1% of patients reported taking at least one action in response, with 32.4% of patients reporting that they researched a condition on the Internet, 18.3% reported that they contacted their healthcare provider and 16.7% reported changing or planning to change a health behavior (patients could report multiple actions). 64.7% of patients reported feeling at least somewhat happy while viewing their problem list, though others reported feeling sad (30.4%), worried (35.7%) or scared (23.8%) (patients could report multiple emotions). A smaller number of patients reported feeling angry (16.6%) or ashamed (14.3%). Patients who experienced an emotional response were more likely to take action. Overall, patients found the ability to view their problem lists very useful and took action in response to the information. However, some had negative emotions. More research is needed into optimal strategies for supporting patients receiving this information.

Personal health records: a randomized trial of effects on elder medication safety

To examine the impact of a personal health record (PHR) on medication-use safety among older adults. Online PHRs have potential as tools to manage health information. We know little about how to make PHRs accessible for older adults and what effects this will have. A PHR was designed and pretested with older adults and tested in a 6-month randomized controlled trial. After completing mailed baseline questionnaires, eligible computer users aged 65 and over were randomized 3:1 to be given access to a PHR (n=802) or serve as a standard care control group (n=273). Follow-up questionnaires measured change from baseline medication use, medication reconciliation behaviors, and medication management problems. Older adults were interested in keeping track of their health and medication information. A majority (55.2%) logged into the PHR and used it, but only 16.1% used it frequently. At follow-up, those randomized to the PHR group were significantly less likely to use multiple non-steroidal anti-inflammatory drugs-the most common warning generated by the system (viewed by 23% of participants). Compared with low/non-users, high users reported significantly more changes in medication use and improved medication reconciliation behaviors, and recognized significantly more side effects, but there was no difference in use of inappropriate medications or adherence measures. PHRs can engage older adults for better medication self-management; however, features that motivate continued use will be needed. Longer-term studies of continued users will be required to evaluate the impact of these changes in behavior on patient health outcomes.

Personal Health Data Storage Protection on Cloud Using MA-ABE

Online personal health record (PHR) enables patients to handle their individual medical records in a centralized way, which really facilitates the storage, access and distribution of personal health data. With the appearance of cloud computing, it is attractive for the PHR service providers to shift their PHR applications and storage into the cloud, in order to like the flexible resources and diminish the operational cost, but by storing PHRs in the cloud, the patients be unable to find physical control to their personal health data, which makes it required for each patient to encrypt her PHR data prior to uploading to the cloud servers. Under encryption, it is difficult to achieve fine-grained access control to PHR data in a scalable and well-organized way. Existing cryptographic enforced access control schemes are mostly designed for the single-owner scenarios. In this paper, we suggest a new patient-centric frame work and a suite of mechanism for data access control to PHRs stored in semi-trusted servers. To allow fine-grained and scalable access control for PHRs, we control attribute based encryption (ABE) techniques to encrypt every patient’s PHR data. Different from earlier works in protected data outsourcing, we center on the multiple data owner scenario, and separate the user in the PHR system into multiple security domains that really decreases the key managing complexity for owners and users. In this way, a high degree of patient privacy is assured concurrently by developing multi-authority ABE and CC-MAABE.

Internet Access and Patient Portal Readiness Among Patients in a Group of Inner-City Safety-Net Practices

The use of online personal health records (PHRs) threatens to transform the digital divide to a health care divide among the underserved. Little is known about underserved patients' ability to access online PHRs. We examined these factors among patients within safety-net practices. Among respondents (N = 654), only 12% had no experience of using a computer, and most were interested in using it to communicate with their provider. Age, sex, and race were not associated with interest in PHRs. A majority of patients have access to the Internet and are interested in using a PHR to manage their care, but they are not prepared.

Barriers and Facilitators of Online Patient Portals to Personal Health Records Among Persons Living With HIV: Formative Research

BackgroundFederal meaningful use standards are promoting adoption of online portals to personal health records (PHRs). However, relatively little is known regarding barriers and facilitators for vulnerable groups such as persons living with human immunodeficiency virus (PLWH).ObjectiveThe objective of this study was to assess barriers and facilitators to use of online PHRs among PLWH.MethodsWe conducted formative research using a written waiting room survey among 120 PLWH regarding barriers and facilitators of portal PHR use. We supplemented findings with data collected from a PLWH focus group, where some members had personal experience with use of a portal.ResultsThe survey had 90 respondents. Eight PLWH participated in the focus group. Most patients (77/90, 86%) reported having at least some experience using the Internet and most expressed interest in features offered by the portal. Notably, 70% (63/90) expressed some interest in being taught how to use it to communicate with their provider. Focus group themes reinforced these findings, but also voiced concern regarding access to private computers.ConclusionsMany PLWH in our sample have experience using computers and most are interested in PHR features. However, computer or broadband access and privacy are important barriers.

Use of the internet and an online personal health record system by US veterans: comparison of Veterans Affairs mental health service users and other veterans nationally

The Department of Veterans Affairs (VA) operates one of the largest nationwide healthcare systems and is increasing use of internet technology, including development of an online personal health record system called My HealtheVet. This study examined internet use among veterans in general and particularly use of online health information among VA patients and specifically mental health service users. A nationally representative sample of 7215 veterans from the 2010 National Survey of Veterans was used. Logistic regression was employed to examine background characteristics associated with internet use and My HealtheVet. 71% of veterans reported using the internet and about a fifth reported using My HealtheVet. Veterans who were younger, more educated, white, married, and had higher incomes were more likely to use the internet. There was no association between background characteristics and use of My HealtheVet. Mental health service users were no less likely to use the internet or My HealtheVet than other veterans. Most veterans are willing to access VA information online, although many VA service users do not use My HealtheVet, suggesting more education and research is needed to reduce barriers to its use. Although adoption of My HealtheVet has been slow, the majority of veterans, including mental health service users, use the internet and indicate a willingness to receive and interact with health information online.

Improving self care of patients with chronic disease using online personal health record

Effective management of chronic diseases such as prostate cancer is important. Research suggests a tendency to use self-care treatment options such as over-the-counter (OTC) complementary medications among prostate cancer patients. The current trend in patient-driven recording of health data in an online Personal Health Record (PHR) presents an opportunity to develop new data-driven approaches for improving prostate cancer patient care. However, the ability of current online solutions to share patients' data for better decision support is limited. An informatics approach may improve online sharing of self-care interventions among these patients. It can also provide better evidence to support decisions made during their self-managed care. To identify requirements for an online system and describe a new case-based reasoning (CBR) method for improving self-care of advanced prostate cancer patients in an online PHR environment. A non-identifying online survey was conducted to understand self-care patterns among prostate cancer patients and to identify requirements for an online information system. The pilot study was carried out between August 2010 and December 2010. A case-base of 52 patients was developed. The data analysis showed self-care patterns among the prostate cancer patients. Selenium (55%) was the common complementary supplement used by the patients. Paracetamol (about 45%) was the commonly used OTC by the patients. The results of this study specified requirements for an online case-based reasoning information system. The outcomes of this study are being incorporated in design of the proposed Artificial Intelligence (Al) driven patient journey browser system. A basic version of the proposed system is currently being considered for implementation.