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The advent of electronic personal health records (PHR) provides a major opportunity to encourage positive health management practices, such as chronic disease management. Yet, to date there has been little attention toward the use of PHRs where advanced health information services are perhaps most needed, namely, in underserved communities. Drawing upon research conducted with safety net providers and patients, the authors propose a multi-level analytical framework for guiding actions aimed at fostering PHR adoption and utilization. The authors first outline distinctive user and technical requirements that need to be considered. Next, they assess organizational requirements necessary to implement PHRs within health systems bound by limited resources. Finally, the authors analyze the overriding health care policy context that can facilitate or thwart such efforts. The conclusion notes that heightened national attention toward health information technology and reform provides a significant opportunity for initiatives whose goal is to increase widepread access to PHRs.
There are important and pressing reasons for providing personal health information to underserved populations. Underserved groups are widespread within the United States and other industrialized countries [
Over the last few years, electronic and Web-based personal health record systems (PHRs) have entered the marketplace and have begun to demonstrate value for health care consumers. PHRs allow the patient to manage personal health information, to maintain provider and insurance services, to manage prescriptions, appointments, and medical procedures, and to receive data from the electronic medical record (EMR) systems used by providers to manage and process medical services provided to patients [
While the emergence of PHRs provides an opportunity to address numerous challenges related to the personal management of health, this can only occur if such systems are usable by and accessible to a diverse array of health care consumers. To this end, a research-based, analytical framework has been designed that provides actionable guidelines for developing PHRs for the underserved. The framework described here focuses on the unique challenges of providing practical PHRs for underserved groups and outlines concurrent actions that need to be taken at the technology, provider, and policy levels. Prefacing this framework is an overview of the unique need for PHRs within the underserved groups, the research that has been conducted within these settings, and the overall findings that have informed what is being forwarded as a “framework for action” toward the timely design and adoption of PHRs within vulnerable populations.
The US health care system struggles with an increasing burden brought about by an aging population, increasing numbers of underinsured populations, the high incidence of chronic health conditions, and an insufficient pool of incoming health care workers [
Information technologies have gradually transformed many aspects of the health care service enterprise, yet scant attention has been paid to their use within provider settings that focus on diverse and vulnerable populations [
The term “underserved” refers to broad and diverse groups who are typically of low socioeconomic status. They are often uninsured or underinsured and are at risk of critical health problems due to gaps in health maintenance. The two most common measures of underserved are those without health insurance and those living in communities deemed by the federal government as medically underserved areas (MUAs) [
While the research presented here has focused on underserved groups in the United States, similar trends have been identified in many industrialized countries. In several European nations, for example, eHealth services are increasingly embraced among Internet users, while underserved groups in many parts of Europe have lower levels of such access [
Within the United States, many see a pressing need for practical solutions that can enable underserved populations to manage their own health care. In California, approximately 90% of adults who are uninsured do not qualify for public health care assistance; the largest proportion (32%) of this population is of Latino ethnicity [
As Senator Harkin said in his introduction to a 2009 congressional hearing on health care reform, “prevention and public health have been the missing pieces in the national conversation about health care reform. It’s time to make them the centerpiece of that conversation. Not an asterisk. Not a footnote. But the centerpiece of health care reform. And we need to guarantee that our most vulnerable high-risk populations have equal access to prevention services and public health [
This research aimed to outline several important ways in which PHRs can assist underserved populations. Also examined were several important obstacles inherent in the adoption of PHR in these communities. Between 2007 and 2008, with support from the Blue Shield Foundation, a series of structured and unstructured expert interviews were conducted. The first phase of interviews (n = 17) consisted of open-ended questions regarding general perceptions of the utility and feasibility of PHRs and included patients, outreach workers, care managers, and medical practitioners who function within the safety net. The second phase of interviews (n = 8) consisted of extensive structured interviews conducted with experienced leaders functioning within systems and policy-related levels [
This two-phased approach is consistent with grounded theory methodologies [
As outlined below, key challenges identified through this and related research included user and technically centered challenges in accessing and using technologies, organizational challenges in the adoption and implementation of EMRs and PHRs, and a general lack of governmental policies and associated funding to provide the support for user and organizational adoption. The challenges, issues, and guidelines presented here were discussed and validated in a variety of settings, including PHR conferences and professional meetings [
The findings from this research have been organized into a deployment framework that synthesizes key issues identified across personal, technology, organizational, and policy related dimensions (
The PHR usability and functionality findings identified in this review suggest that some members of underserved populations are aware of tools such as PHRs, but efforts to encourage adoption often fall short due to the inability to engage patients in direct health management behaviors and enable transparent, patient-driven communications between patients and their care providers [
Conversely, there is a motivation among safety net patients to get some control over their health information. For example, in field visits to community clinics, it was identified that many members of underserved groups go to great lengths to keep track of small but important health information items and feel empowered by information resources such as ID cards issued by health providers because they know that having a document or card will increase their credibility with health care providers in future encounters [
In terms of overcoming these challenges, designers need to incorporate insights and findings related to human-computer interaction in underserved settings with best practices in health care to create a system that is secure, consumer-centric, and accessible [
In addition, there is value in understanding the communities in which the 66 million underserved Americans live and work. For example, interviewees noted that caretaker roles among migrant workers are often occupied by women, who may serve as health managers for multiple generations in a family group. Some families adapt by having a single member of the family obtain health insurance. This family member in turn serves as a channel of information and may even act as a conduit for services and medications for other members of the family. New PHR solutions should be adapted to work within these cultural practices. Moreover, there is a pressing need to connect personal health solutions with the community to address emerging public health issues. For example, asthma is on the rise in underserved communities, and there are currently inadequate means to engage families and thus facilitate the use of preventive measures [
The value of having a primary medical home (a primary health provider or other resource who retains an individual’s health information and serves as a coordinator for services) is now widely accepted [
It has been argued that technological diffusion will change this circumstance [
The interviews and field visits conducted with safety net providers confirmed these findings and revealed several new issues and opportunities. For example, many experts and target community members emphasized that a prerequisite to access and PHR use was the development of trust, both in the privacy and usefulness of the technology, as well as in the health care system itself. While secure methods for accessing our health records is a widespread concern, such an issue is exacerbated for those who are reliant on accessing information from public resources. Others pointed to opportunities for access by designing systems that allowed for simple health information transactions and the ability to review information over more readily adopted mobile devices such as cell phones. This is of great significance for safety net populations, as they are often highly transient and in need of flexible and more secure methods for managing health information.
Attempts to implement PHR solutions for the underserved are challenged by a fragmented health care system in which there is limited communication between hospitals, clinics, practitioners, and community-oriented providers. Fragmentation leads to higher costs from duplicated services, as well as the potential health risk that arises from unnecessary medical procedures. In order for PHR systems to be effective for the underserved populations, broad-based participation and collaboration will be needed from all stakeholder and service provider groups. Consistent with this approach are projects such as the MiVIA program in Northern California, which is a PHR system for migrant farm worker populations that has diligently included consumers, health care leaders, and staff of community-oriented organizations in the development of the application with the aim of increasing communication opportunities across all aspects of the service chain [
Another challenge for PHR deployment within all populations, including underserved populations, is the high cost of implementing EMRs used by service providers. PHRs will be most valuable to patients if they are highly integrated with EMR systems, but not all health care providers use EMR systems as of yet, and the adoption of such systems has been slow. Despite the recent national push through the American Reinvestment and Recovery Act (ARRA) of 2009 to integrate EMRs into health service organizations, sufficient funding is often lacking for community health providers. The cost for the rollout of an EMR system per clinician can reach tens of thousands of dollars, an amount that does not include the costs of lost productivity as practitioners and health care personnel learn to operate and assimilate new systems into their practice [
Interviews and site visits to community clinics and safety net providers revealed that there is a reluctance to step forward in providing PHRs for their clientele. The principal reason is financial—these organizations are very hard-pressed for basic EMR resources. There is also reluctance given the diverse population that frequents the clinics. However, active involvement with health care is of great importance for safety net populations and suggests a pressing need to find innovative means for electronically delivering this information in ways that recognize the organizational limitations of the safety net setting. For example, as an outcome of this research, the researchers are actively field testing a PHR designed along the lines of an ATM [
Given the historic health reform changes presently underway in the US, the time is ripe to advance policies that assist in the implementation of a PHR model for underserved communities. The recently passed health reform legislation has placed near-universal coverage high on the policy agenda and, before that, the passage of ARRA unleashed a wave of national efforts to encourage the broad exchange of health information across local, regional and national healthcare entities. Efforts to increase health information sharing included opportunities for EMR adoption reimbursement, support for Regional (and Local) Extension Centers designed to aid providers in adoption and use of health IT and a host of Beacon Communities to be featured around the country that are composed of providers and their patients who can be models of effective use of health IT [
A cornerstone for these activities is the concept of “meaningful use,” which provides an operational definition for the range of functionalities EMR systems must demonstrate in order to receive federal reimbursement from ARRA [
The point that is being advanced here is that there is both a clinical and societal rationale for ensuring that underserved populations have ready access to PHRs. From the clinical perspective, PHRs can lead to active engagement in health affairs for a segment of the population that has high rates of chronic disease. From a societal perspective, PHRs may aid in the public health goal of ensuring improved health and health conditions throughout the country. Indeed, the emerging domain of public health informatics has outlined several of the gains that can be made in terms of immunization registries, bio surveillance, and related public health monitoring [
Interviews and field visits confirmed that the issue of privacy (and trust) is crucial to PHR utilization and is an issue that deserves much attention due to a potential lack of understanding within this population. In particular, there is limited understanding within underserved groups of the degree to which health information can be data mined and the consequences it entails. For example, individuals concerned about issues of residency status or family contact information may be particularly sensitive to information privacy and security due to fears (whether valid or not) of persecution or deportation. While interviewees from these populations had underlying concerns related to their status as noncitizens, the majority of them expressed minimal concerns about providing health information online. (It is perhaps debatable as to whether they truly had minimal concerns or if they did not fully understand the implications of entering health information online). In any case, as new provisions are enacted it will be important to analyze the specific implications for the underserved and how to best ensure that their rights are communicated and upheld. For example, ARRA of 2009 contains provisions that extend and strengthen the Health Insurance Portability and Accountability Act (HIPAA), including implications for PHR vendors [
As outlined in the findings above, this research identified four critical layers to consider when devising PHRs for use in underserved populations: personal, technical, organizational, and policy-related dimensions [
Framework for PHR systems in underserved populations
Conceptual Level | Constructs | Guidelines Relating to the Underserved |
Personal | Health management |
PHR systems in underserved communities need to address integrated care challenges and bolster continuity of care with proper assessment and maintenance of health outcomes. PHR systems in underserved communities need to include patient education and encouragement toward services needed to engender preventive health maintenance behaviors. |
Language and literacy |
PHR systems in underserved communities need to feature multi-lingual capabilities. PHR systems in underserved communities need to be explicitly attuned to limited levels of literacy, computer skills, and health information knowledge. |
|
Privacy |
Privacy and security features need to not only address HIPAA requirements, but also allay concerns unique to underserved populations and provide education on its importance. |
|
Technical | Infrastructure |
Low-cost standardized means for effectively importing and exporting patient data across community clinic environments are needed to allow for low-cost architectural approaches. Underlying the adoption of software systems, there is a need for basic technological infrastructure improvements in community provider settings. |
User network |
Computer experience and access is limited for the underserved, and, therefore, very user-friendly and publicly accessible interfaces need to be provided. User access requires a range of modalities depending on the type of fixed and mobile access needs and requirements that occur at both the provider and user level. Critical user locations such as emergency rooms require appropriately adapted and efficient interfaces. |
|
Organizational | Administration |
As a majority of community health patient data is still paper-based, providers will need incentives to adopt new technologies. Community health organizations need to introduce new workflow and patient communication practices to facilitate PHR use as a health self-management tool. |
Adoption and integration |
Community health organizations need increased financial support in order to boost adoption of PHRs and their role in integrated service delivery. Hastening of easy-to-adopt PHR-related standards and applications is needed to reduce administrative overhead and hesitance toward adoption for patient activation. |
|
Outreach |
Increased efforts are needed to provide outreach and education that address the unique personal health management and communication needs of the underserved. Caregivers need to be equally educated so that they can become true ambassadors of health information technologies and their importance. |
|
Policy | Funding and regulations |
Health care reform of 2010 provides a major opportunity to extend PHR systems to underserved communities. Federal ARRA of 2009 and related policies need to advance significant PHR requirements and incentives that are inclusive of underserved populations. Federal ARRA of 2009 and related policies need to ensure that the privacy and confidentiality concerns of underserved communities are addressed. |
Beginning with the personal domain noted in
Moving to the technical domain of the framework, there are also pervasive technical issues that underscore these personal constraints. Largest among these is a lack of widely adopted standards for the exchange of health data. Finding flexible, light-weight PHR systems that can be worked into a provider’s existing EMR system would be of invaluable assistance to having health information at the ready. Issues include provision of systems that can be effectively and inexpensively integrated with existing EMR systems while at the same time providing an interface that can clearly communicate health information to users. Furthermore, to reemphasize the aforementioned personal constraints, while a PHR technically provides the opportunity for extensive outreach abilities to patients, its effectiveness can be heavily undermined by not supporting the personal requirements (privacy, language, literacy, and access).
At the organizational domain level, the framework highlights how adoption of PHRs within public and private agencies, including community health organizations, may provide long-term financial benefits, but that in the short term it will necessitate extensive outreach and education efforts in order to influence not only the patients of these organizations, but their workers as well. It is possible that community health providers will have no choice but to adopt IT systems that can increase communications with their patients. A recent report by the California HealthCare Foundation noted that Medicare alone spends over US $12 billion per year for potentially preventable readmissions due to the inability to provide effective discharge and health education services [
Finally, health care providers will only be able to adopt PHR systems if supported by policies that understand the unique issues encountered by community clinics and provide the funding needed to acquire the proper resources. This includes an understanding of how PHRs could be used to address public health issues and support inequities of Medicaid and Medicare systems. States are experiencing a continuing shortage of nurses for general care, decreases in the amount of doctors considering work in adult medicine and family practice, and declining provider participation in federal fee-for-service programs [
Exacerbating these issues are policies that have increased the number of restrictions on Medicaid reimbursement through federal laws and regulations. In relation to the PHR, if providers are unable to identify ways in which reimbursements can be obtained through PHR communications with patients, it is unlikely that their adoption will be seen as a feasible investment. Although there has been a national push toward adoption and integration of EMR systems as a whole, it is argued that the funding needed to allow community health organizations to do so in a manner that includes PHR capacity is yet to be adequate.
To sum up, this framework is meant to highlight considerations at the personal, technological, organizational, and policy levels that, if addressed, would facilitate the utilization of PHRs within underserved settings. While not a “recipe” for adoption, this framework does lay out general design guidelines for both technical design and broader organizational and policy design. Of course, achieving such adoption does not in and of itself translate into positive health outcomes. However, the emerging literature on PHRs does suggest that adoption has promise for health activation, communication, and improved health management [
A limitation that should be noted is that although the patients and experts interviewed for this study provided a varied and broadly representative sample of the available expertise on the topic of underserved groups, this research did not presume to fully represent all of the possible subcategories of underserved communities that can be defined by language, culture, age, disability status, economic status, and other factors. It is clear that additional research is required to refine our understanding of how PHRs can address specific subgroups within these populations. The premise of the research also represented the most significant challenge, namely, that there has not been systematic adoption of PHRs in safety net settings. This meant that there was not significant existing literature or diverse implementations to draw upon. Moreover, many community clinics are currently struggling with basic health IT systems and the notion of a PHR can seem as an “out year” consideration. This context represented both a challenge and an opportunity for the research.
ARRA of 2009 contained a major push for health IT, and this has been followed up by broader and historic health care reform. While this legislation has provided an unprecedented level of support for health IT, the act does not specifically target solutions for underserved populations. Yet, as discussed throughout this paper, there is a promising business, policy, and social case for using electronic services to enhance patient self-management among underserved populations. There are significant resources within ARRA of 2009 that can provide an important opportunity to extend electronic personal health records and services to underserved communities, such as through community health centers.
While the resources within ARRA of 2009 provide a general context for change, in and of themselves they are not sufficient to achieve the utilization that is warranted in underserved communities. As suggested by the framework, there are top-down, bottom-up, and midlevel needs that should be attended to in order to facilitate utilization. Self-empowerment through personal health technologies provides the opportunity to improve not only the health and welfare of the patient but also the fiscal and social health of society. Underserved groups are subject to what has been described as an “inverse information law” that limits access to information for those who need it most [
The authors wish to acknowledge the generous support of the Blue Shield Foundation for portions of this research and to the California HealthCare Foundation (of Oakland, CA) for support of the PHR pilot testing noted in the paper. The authors would also like to acknowledge the ongoing support of the Kay Center for E-Health Research.
The authors note current research and testing of an ATM-like PHR system in underserved communities; this application (HealthATM) may have commercial potential
Agency for Health care Research and Quality
American Reinvestment and Recovery Act
automated teller machine
electronic medical record
Health Insurance Portability and Accountability Act
health information technology
medically underserved area
personal health record