Personally Controlled Health Records Research Articles

The Experiences of Three Different User Groups Using Personally Controlled Health Record for Multidisciplinary Care Team

Personally Controlled Health Records (PCHR) are patient-centric tools which allow individuals to own, manage, access and share their health information online from anywhere, at any time. Patient-centric tools have received considerable interest and investment in recent years worldwide. These tools are thought to have the potential to increase individuals’ self-management and involvement in their own health, as well as improve healthcare efficiency and delivery. The aim of this study is to report and analyse the experiences of three different user groups using PCHR for Multidisciplinary Care Team (MDCT) including the advantages, disadvantages, barriers and obstacles, and the current state of PCHR. In order to achieve the aim of this study, sixteen interviews with key informants from three different user groups were conducted in Dunedin, New Zealand. Interviews were transcribed and analysed with thematic analysis. The key findings of this research showed that those who can benefit the most from PCHRs are the least able to use it. It suits those who have basic knowledge about computers and the internet and those who can afford to use them. PCHR is also best suited for individuals who are motivated about their health despite their health condition. However, more research is needed in the future with a larger sample, an easier to use PCHR, different population other than community health workers, patients with different chronic illnesses, and healthy patients. This research can be used as a basis and tested in future research on PCHR adoption.

Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users

BackgroundData stored in personally controlled health records (PCHRs) may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue.MethodsCross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach.ResultsOf 261 respondents (56% response rate), more reported they would share all information with the state/local public health authority (63.3%) than with an out-of-hospital provider (54.1%) (OR 1.5, 95% CI 1.1, 1.9; p = .005); few would not share any information with these parties (respectively, 7.9% and 5.2%). For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values < .05), and reflected concern about anonymity (47.2%), government insensitivity (41.5%), discrimination (24%). For provider sharing, reticence was higher for all topics compared to contagious illness (ORs 6.3 to 1.5, all p-values < .05), and reflected concern for relevance (52%), disclosure to insurance (47.6%) and/or family (20.5%).ConclusionsPediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed.

Emergency access for online personally controlled health records system

A personally controlled health records (PCHR) system allows a patient user to share his/her health records with trusted physicians by manually granting them the access privilege to his/her online records. However, it presents the problem of emergency access in situations where the user is physically unable to grant the access and the access is required by an Emergency Room (ER) physician who does not have the privilege at that moment. To deal with such a problem, we introduce an online polling system to provide the emergency access control to PCHR systems. For each emergency access request, the access privilege is controlled according to the combined opinions of the patient's preset emergency contacts and other online registered physicians. Because our system is based on the demographic number of the physician community nationwide, it provides a stable emergency access control at all times.

Helping High-Risk Youth Move through High-Risk Periods: Personally Controlled Health Records for Improving Social and Health Care Transitions

New patient-centered information technologies are needed to address risks associated with health care transitions for adolescents and young adults with diabetes, including systems that support individual and structural impediments to self- and clinical-care. We describe the personally controlled health record (PCHR) system platform and its key structural capabilities and assess its alignment with tenets of the chronic care model (CCM) and the social-behavioral and health care ecologies within which adolescents and young adults with diabetes mature. Configured as Web-based platforms, PCHRs can support a new class of patient-facing applications that serve as monitoring and support systems for adolescents navigating complex social, developmental, and health care transitions. The approach can enable supportive interventions tailored to individual patient needs to boost adherence, self-management, and monitoring. The PCHR platform is a paradigm shift for the organization of health information systems and is consistent with the CCM and conceptualizations of patient- and family-centered care for diabetes. Advancing the approach augers well for improvement around health care transitions for youth and also requires that we address (i) structural barriers impacting diabetes care for maturing youth; (ii) challenges around health and technology literacy; (iii) privacy and confidentiality issues, including sharing of health information within family and institutional systems; and (iv) needs for evaluation around uptake, impacts, and outcomes.

Electronic health records, platforms, libraries, and evidence: report on the Association of Academic Health Sciences Libraries symposium's keynote presentation by Kenneth Mandl

The keynote speaker for the Association of Academic Health Sciences Libraries symposium on electronic health records (EHRs) and knowledge-based information was Kenneth Mandl. Mandl is associate professor at Harvard Medical School and director of the Intelligent Health Laboratory at the Children's Hospital Informatics Program, Harvard University–Massachusetts Institute of Technology Division of Health Sciences Technology. He is a pioneer in both consumer informatics and population health monitoring, and he has innovated and published extensively in the areas of personally controlled health records (PCHRs), disease outbreak detection, public health surveillance, and national health information infrastructure. Mandl has reviewed and approved the following account of his keynote address, “Electronic Health Records: Platforms, Libraries, and Evidence.”

Sharing Medical Data for Health Research: The Early Personal Health Record Experience

BackgroundEngaging consumers in sharing information from personally controlled health records (PCHRs) for health research may promote goals of improving care and advancing public health consistent with the federal Health Information Technology for Economic and Clinical Health (HITECH) Act. Understanding consumer willingness to share data is critical to advancing this model.ObjectiveThe objective was to characterize consumer willingness to share PCHR data for health research and the conditions and contexts bearing on willingness to share.MethodsA mixed method approach integrating survey and narrative data was used. Survey data were collected about attitudes toward sharing PCHR information for health research from early adopters (n = 151) of a live PCHR populated with medical records and self-reported behavioral and social data. Data were analyzed using descriptive statistics and logistic regression to characterize willingness, conditions for sharing, and variations by sociodemographic factors. Narrative data were collected through semistructured focus group and one-on-one interviews with a separate sample of community members (n = 30) following exposure to PCHR demonstrations. Two independent analysts coded narrative data for major and minor themes using a shared rubric of a priori defined codes and an iterative inductive process. Findings were triangulated with survey results to identify patterns.ResultsOf PHCR users, 138 out of 151 (91%) were willing to share medical information for health research with 89 (59%) favoring an opt-in sharing model. Willingness to share was conditioned by anonymity, research use, engagement with a trusted intermediary, transparency around PCHR access and use, and payment. Consumer-determined restrictions on content and timing of sharing may be prerequisites to sharing. Select differences in support for sharing under different conditions were observed across social groups. No gender differences were observed; however differences in age, role, and self-rated health were found. For example, students were more likely than nonstudents to favor an opt-out sharing default (unadjusted odds ratio [OR] = 2.89, 95% confidence interval [CI] 1.10 - 7.62, P = .03). Participants over age 50 were less likely than younger participants to report that payment would increase willingness to share (unadjusted OR = 0.94, 95% CI 0.91 - 0.96, P < .001). Students were more likely than nonstudents to report that payment would increase their willingness to share (unadjusted OR 9.62, 95% CI 3.44 - 26.87, P < .001). Experiencing a public health emergency may increase willingness to share especially among persons over 50 (unadjusted OR 1.03, 95% CI 1.01 - 1.05, P = .02); however, students were less likely than non-students to report this attitude (unadjusted OR 0.13, 95% CI 0.05 - 0.36, P < .001). Finally, subjects with fair or poor self-rated health were less likely than those with good to excellent self-rated health to report that willingness to share would increase during a public health emergency (unadjusted OR 0.61, 95% CI 0.38 - 0.97, P = .04).ConclusionsStrong support for sharing of PCHR information for health research existed among early adopters and focus group participants, with support varying by social group under different conditions and contexts. Allowing users to select their preferred conditions for sharing may be vital to supporting sharing and fostering trust as may be development of safety monitoring mechanisms.

Emergency Access Authorization for Personally Controlled Online Health Care Data

Personally controlled health records (PCHR) systems have emerged to allow patients to control their own medical data. In a PCHR system, all the access privileges to a patient's data are granted by the patient. However, in many emergency cases, it is impossible for the patient to participate in access authorization on site when immediate medical treatment is needed. To solve the emergency access authorization problem in the absence of patients, we consider two cases: a) the requester is already in the PCHR system but has not obtained the access privilege of the patient's health records, and b) the requester does not even have an account in the PCHR system to submit its request. For each of the two cases, we present a method for emergency access authorization, utilizing the weighted voting and source authentication cryptographic techniques. Our methods provide an effective, secure and private solution for emergency access authorization, that makes the existing PCHR system frameworks more practical and thus improves the patients' experiences of health care when using PCHR systems. We have implemented a prototype system as a proof of concept.

Parent-Driven Technology for Decision Support in Pediatric Emergency Care

A quasi-experimental intervention study composed of control and intervention periods was conducted to determine if a parent-driven health information technology influenced completeness of documentation and adherence to evidence-based emergency care for children. Structured chart abstraction was used to assess documentation and correctness of clinical actions at test ordering, medication prescribed for disease, and medication ordered for pain in a tertiary care pediatric emergency department and a suburban general emergency department. During the intervention periods, parents of children who presented with complaints related to otitis media, urinary tract infection, head trauma, or asthma entered data into a health information technology (ParentLink), which produced treatment plans in the context of evidence-based guidelines. Of 1,410 subjects analyzed, 1,072 (76%) were assigned to one of four disease categories: urinary tract infection (22%), otitis media (20%), asthma (11%) and head trauma (47%). During ParentLink use, documentation of pain significantly improved (28% incomplete [control] versus 15% [intervention], p = .003). Incorrect actions for pain treatment decreased, but not significantly (33% [control] versus 24% [intervention], p = .13). ParentLink did not influence actions for test ordering or prescribing for disease. Parent-driven health information technology intended to translate parents' knowledge into clinical practice and to support evidence-based care suggested a trend toward modest impact on pain management but did not demonstrate broad effects across diseases or care processes. The emergence and proliferation of personally controlled health records (PCHRs) presents opportunities for patients and parents to control their medical profiles. Although ParentLink is not a comprehensive PCHR, it represents a step in incorporating parent-derived information into medical decision making.

Acceptability of a Personally Controlled Health Record in a Community-Based Setting: Implications for Policy and Design

BackgroundConsumer-centered health information systems that address problems related to fragmented health records and disengaged and disempowered patients are needed, as are information systems that support public health monitoring and research. Personally controlled health records (PCHRs) represent one response to these needs. PCHRs are a special class of personal health records (PHRs) distinguished by the extent to which users control record access and contents. Recently launched PCHR platforms include Google Health, Microsoft’s HealthVault, and the Dossia platform, based on Indivo.ObjectiveTo understand the acceptability, early impacts, policy, and design requirements of PCHRs in a community-based setting.MethodsObservational and narrative data relating to acceptability, adoption, and use of a personally controlled health record were collected and analyzed within a formative evaluation of a PCHR demonstration. Subjects were affiliates of a managed care organization run by an urban university in the northeastern United States. Data were collected using focus groups, semi-structured individual interviews, and content review of email communications. Subjects included: n = 20 administrators, clinicians, and institutional stakeholders who participated in pre-deployment group or individual interviews; n = 52 community members who participated in usability testing and/or pre-deployment piloting; and n = 250 subjects who participated in the full demonstration of which n = 81 initiated email communications to troubleshoot problems or provide feedback. All data were formatted as narrative text and coded thematically by two independent analysts using a shared rubric of a priori defined major codes. Sub-themes were identified by analysts using an iterative inductive process. Themes were reviewed within and across research activities (ie, focus group, usability testing, email content review) and triangulated to identify patterns.ResultsLow levels of familiarity with PCHRs were found as were high expectations for capabilities of nascent systems. Perceived value for PCHRs was highest around abilities to co-locate, view, update, and share health information with providers. Expectations were lowest for opportunities to participate in research. Early adopters perceived that PCHR benefits outweighed perceived risks, including those related to inadvertent or intentional information disclosure. Barriers and facilitators at institutional, interpersonal, and individual levels were identified. Endorsement of a dynamic platform model PCHR was evidenced by preferences for embedded searching, linking, and messaging capabilities in PCHRs; by high expectations for within-system tailored communications; and by expectation of linkages between self-report and clinical data.Conclusions Low levels of awareness/preparedness and high expectations for PCHRs exist as a potentially problematic pairing. Educational and technical assistance for lay users and providers are critical to meet challenges related to: access to PCHRs, especially among older cohorts; workflow demands and resistance to change among providers; inadequate health and technology literacy; clarification of boundaries and responsibility for ensuring accuracy and integrity of health information across distributed data systems; and understanding confidentiality and privacy risks. Continued demonstration and evaluation of PCHRs is essential to advancing their use.

Whose Personal Control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients

Personally controlled health records (PCHRs) enable patients to store, manage, and share their own health data, and promise unprecedented consumer access to medical information. To deploy a PCHR in the pediatric population requires crafting of access and security policies, tailored to a record that is not only under patient control, but one that may also be accessed by parents, guardians, and third-party entities. Such hybrid control of health information requires careful consideration of both the PCHR vendor's access policies, as well as institutional policies regulating data feeds to the PCHR, to ensure that the privacy and confidentiality of each user is preserved. Such policies must ensure compliance with legal mandates to prevent unintended disclosures and must preserve the complex interactions of the patient-provider relationship. Informed by our own operational involvement in the implementation of the Indivo PCHR, we provide a framework for understanding and addressing the challenges posed by child, adolescent, and family access to PCHRs.

Evaluation of Influenza Prevention in the Workplace Using a Personally Controlled Health Record: Randomized Controlled Trial

Background Personally controlled health records (PCHRs) are accessible over the Internet and allow individuals to maintain and manage a secure copy of their medical data. These records provide a new opportunity to provide customized health recommendations to individuals based on their record content. Health promotion programs using PCHRs can potentially be used in a variety of settings and target a large range of health issues.Objectives The aim was to assess the value of a PCHR in an employee health promotion program for improving knowledge, beliefs, and behavior around influenza prevention.Methods We evaluated a PCHR-based employee health promotion program using a randomized controlled trial design. Employees at Hewlett Packard work sites who reported reliable Internet access and email use at least once every 2 days were recruited for participation. PCHRs were provided to all participants for survey administration, and tailored, targeted health messages on influenza illness and prevention were delivered to participants in the intervention group. Participants in the control group received messages addressing cardiovascular health and sun protection. The main outcome measure was improvement in knowledge, beliefs, and behavior around influenza prevention. Secondary outcomes were influenza vaccine rates among household members, the impact of cardiovascular health and sun protection messages on the control group, and the usability and utility of the PCHR-based program for employees.Results The intervention did not have a statistically significant effect on the influenza knowledge elements we assessed but did impact certain beliefs surrounding influenza. Participants in the intervention group were more likely to believe that the influenza vaccine was effective (OR = 5.6; 95% CI = 1.7-18.5), that there were actions they could take to prevent the flu (OR = 3.2; 95% CI = 1.1-9.2), and that the influenza vaccine was unlikely to cause a severe reaction (OR = 4.4; 95% CI = 1.3-15.3). Immunization rates did not differ between the intervention and control groups. However, participants in the intervention group were more likely to stay home during an infectious respiratory illness compared with participants in the control group (39% [16/41] vs 14% [5/35], respectively; P = .02). The program also succeeded in improving recognition of the signs of heart attack and stroke among participants in the control group. Overall, 78% of participants rated the PCHR as “extremely/very” easy to use, and 73% responded that they would be “extremely/very” likely to participate again in a PCHR-based health promotion system such as this one.Conclusions With a small sample size, this study identified a modest impact of a PCHR-based employee health program on influenza prevention and control. Employees found the PCHR acceptable and easy to use, suggesting that it should be explored as a common medium for health promotion in the workplace.Trial RegistrationClinicalTrials.gov NCT00142077

Indivo: a personally controlled health record for health information exchange and communication

BackgroundPersonally controlled health records (PCHRs), a subset of personal health records (PHRs), enable a patient to assemble, maintain and manage a secure copy of his or her medical data. Indivo (formerly PING) is an open source, open standards PCHR with an open application programming interface (API).ResultsWe describe how the PCHR platform can provide standard building blocks for networked PHR applications. Indivo allows the ready integration of diverse sources of medical data under a patient's control through the use of standards-based communication protocols and APIs for connecting PCHRs to existing and future health information systems.ConclusionThe strict and transparent personal control model is designed to encourage widespread participation by patients, healthcare providers and institutions, thus creating the ecosystem for development of innovative, consumer-focused healthcare applications.