Over the last decade, electronic personal health records (PHR) systems, and the patient portals used to provide patients access to those records, have become interwoven into the fabric of the U.S. healthcare. System. A recent study has found that adoption of personal health records (PHRs) will increase to the point where 75 percent of adults will use a PHR by 2020.
Unfortunately, there is still a broad gap between the effective use of PHR technologies where advanced health information services are perhaps most needed, especially within the underserved communities supported by community health centers. A recent report by the Commonwealth Fund found that while the majority of federally qualified health centers were not using Electronic Health Records, only 35 percent of health centers can electronically send patients reminder notices for preventive or follow-up care, the same percentage reported in 2009. Clearly, there is ground to cover.
This guide provides health centers with an adoption framework and guidelines that can be used to assess the goals and methods for deploying electronic patient engagement services. The approach is multi-dimensional in that it recognizes the interrelated socio-economic, user, organizational and policy elements to successful adoption and use.
Extending PHRs to Underserved Populations
Resource Context
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 resulting in broad inequities in many communities. Such populations are typically diverse, low-income groups who lack adequate access to traditional care and are often referred to as living in the "safety net".
Due to the fragmented nature of this population’s health care background and a general lack of preventive health measures, individuals in the safety net (including low income, uninsured, homeless, and other special needs groups are taxing general health and emergency health systems to their limits, resulting in adverse fiscal impacts on providers as well as private and governmental payers. Outside of increasing medical staff and resources, one of the most promising ways to help alleviate the stress incurred by ever evolving patient needs and the health care systems that support them is to increase people’s ability to manage their own health. PHRs provide this opportunity if effectively implemented into the community health center setting and workflow.
Audience
The strategies and tools in this Guide are targeted to all levels of health center staff, and health center partners that support Electronic Patient Engagement adoption goals.
Everyone who actively participates in the guidance and day-to-day operations of a health center has a responsibility to:
- Increase their awareness of electronic patient engagement technologies and methods for effectively deploying them at their site.
- Understand the unique needs of their population and leverage the tools and services necessary to activate and engage their patient toward improvement of their health
Why Using this Guide is Important for Health Centers
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 Health Record (EHR) systems used by providers to manage and process medical services provided to patients.
In addition, PHRs can help patients maintain:
- a continuous health record for themselves and family members
- more extensive communication with physicians and other health care providers
- new levels of patient health management with the opportunity for an available, cumulative health management record.
How to Use this Guide
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. 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. This framework is organized around several dimensions that represent major factors influencing adoption and utilization in community health centers; those dimensions are: personal, technical, organizations, and policy.
Factors Influencing Health Self-Management within Community Health Centers
Personal: Challenges to Usability and Adoption
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.
Health information is frequently presented in a manner that requires a higher literacy level than many other forms of information; this presents obstacles for underserved subgroups, particularly ethnic minorities and undocumented workers who often lack sufficient formal education to become successful consumers of health information.
Literacy shortfalls impact:
- the ability to understand consent forms, to understand clinical instructions,
- to follow prescriptions,
- and to manage appointments.
- In addition, this barrier is compounded when conveyed through an information system that people are not experienced in using such as the PHR.
Beyond these challenges, 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.
Technical: Overcoming Barriers to Access
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. For underserved populations, it is equally, if not more, important that patients have a “virtual medical home” due to the highly fragmented set of services in this population. However, a distinct obstacle that underserved communities will endure in trying to adopt PHRs is the lack of access to a computer either at home or at work and the related technical experience that comes with ownership. The well-documented “digital divide” still separates underserved communities from information technologies by a technology gap that results from low income, little or no education, misunderstanding of the value or purpose of information technologies, as well as many other limiting factors. These conditions, coupled with the challenges of usability, literacy, and consistent health care, limit the potential adoption and use of PHRs.
It has been argued that technological diffusion will change this circumstance. However, while overall computer ownership and use have increased at all levels of society, the elderly and populations of the lowest income levels still lag behind despite dramatic decreases in the cost of computer technologies. Assuming that access to PHRs is not restricted by cost, other barriers must be considered. Compaine suggested that a key factor in determining adoption of a technology is whether the skill level required to use a particular tool crosses a threshold where it is easy to use by the general population. Similarly, it is recommended that developers should create technologies that include cultural adaptations for specific populations, especially when considering culturally diverse “low-tech” settings, both domestically and internationally.
Interviews and field visits conducted with safety net providers have confirmed these findings and revealed several new issues and opportunities. For example, many experts and target community members emphasize 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.
Organizations: Managing Fragmentation and Costs
Attempts to implement PHR solutions such as patient portals 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. 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.
Another challenge for PHR deployment within all populations, including underserved populations, is the high cost of implementing EHRs used by service providers. Due to the high cost of purchase, implementations, and maintenance of EHR systems, add-ons such as patient portal systems do not get the attention deserved.
The cost for the rollout of an EHR 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. Recent research findings by the Agency for Healthcare Research and Quality (AHRQ) support this need for understanding the use and value of a system, suggesting that the most effective PHRs will be integrated throughout a patient’s care plan in a manner that informs patients of the health benefits that they will potentially experience through use of the PHR. This, however, cannot happen until the community health providers that support the underserved are able to effectively adopt EHR systems for themselves.
Policy: Achieving PHR Coverage to Empower Vulnerable Patients
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.
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. These tools will be made that much more valuable by ensuring that the underserved are active participants in these new personal health technologies. That is, the widespread adoption of PHRs could provide an important and missing link toward connecting a population-level focus of public health to the individual circumstance of persons who could benefit from user-focused systems that help manage and potentially prevent chronic conditions.
Framework for PHR systems in underserved populations
Creating Actionable Strategies for Success
Based on findings from extensive research into community health center adoption of PHR technologies, a deployment framework has been developed that synthesizes key issues identified across personal, technology, organizational, and policy related dimensions as outlined in the table below. Based on findings from interviews, field visits, and literature review, each of these dimensions is advanced as requiring attention when considering and implementing PHRs in underserved populations.
| Domain |
Primary Concepts |
Guidelines |
| Personal |
Health Management, Language and Literacy, Trust and Privacy |
- PHR systems in underserved communities need to address integrated care challenges and bolster continuity of care with proper assessment and maintenance of health outcomes.
- PHRs need to include patient education and encouragement toward services that engender preventive health maintenance behaviors.
- Multi-lingual capabilities need to be included with PHRs to address a very multicultural population.
- PHR systems in underserved communities need to be explicitly attuned to limited levels of literacy, computer skills, and health information knowledge.
- Privacy and security features need to not only address HIPAA requirements, but also allay concerns of trust unique to underserved populations and provide education on its importance.
|
| Technical |
Infrastructure, Interoperability, Social Network |
- 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.
- Computer experience and access are 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 |
Adoption, Integration, Outreach, |
- New workflow and patient communication practices to facilitate PHR use as a health self-management tool need to be provided to health centers.
- 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.
- 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, Regulations |
- The Office for Civil Rights (OCR) release of the HIPAA Omnibus of January 2013: This update to HIPAA imposed new requirements in terms of third-party stewardship of patient data. All Business Associates (BA) that health providers contract with that manage sensitive patient data in some capacity must also comply with HIPAA mandates. It is the responsibility of healthcare providers, as part of their Security Risk Assessment, to ensure that their BAs are maintaining compliance, and may result in a significant burden for small to medium practices.
- Federal Trade Commission (FTC) policies affecting patient facing applications include Health Breach Notification laws and the Children's Online Privacy Protection Rule (COPPA)
|
PHR Adoption Diagnostic Tool
Given the background and information provided above, health centers need to then assess their specific purpose for each form of electronic patient engagement they wish to implement.
Below are five essential questions that should be outlined before engaging in any form of electronic patient engagement strategy. As an example we use the case of implementing patient portal functionality at your site.
Assess Your Five Most Important Electronic Patient Engagement Questions:
- What is the purpose in implementing the patient portal? – Try to be honest with your answer so you can appropriately set priorities and expectations. Is it simply because it is a Meaningful Use requirement you are trying to attest to? Or is there a specific efficiency or outcome you are trying to achieve?
- Who are your targeted clients? – Certainly, you want to make these tools available to all of your patients, but is there a particular population you are trying to reach or one that you think will make the most use of this technology? There is no one fit for many of these tools and so by focusing efforts on the primary population you think will be your key adopters can help you focus on the right issues. By engaging the people who can pick it up most quickly or need it most, then you can take advantage of the network effect in which their participation increases the participation of others.
- Based on the clients targeted, what do they value most in terms of health services? – Is your objective to increase patient access to their lab results and care summaries to answer concerns known to this cohort? Or maybe you are trying to increase channels of communication for patients who are otherwise hard to reach. Maybe you are trying to provide your patients with easier ways to make and change their appointments because many are working mothers with difficult schedules. These new technologies at times come with too many options and features and it is important to focus on the key areas that will provide the most value to your patients.
- How will you determine whether you are achieving the desired results? - Create specific measures that can be used to determine whether you are accomplishing the goals of your implementation. Potential measures might include the number of patients who have logged into the portal, accessed a specific part of the portal, completed a desired activity such as making an appointment.
- Based on the desired results you have outlined, what is your plan to achieve them? Based on each measure you outlined identify the personal, technical, organizational, and policy related tasks as outlined above in relation to the electronic patient engagement service you are deploying so that you have an actionable guide for achieving results.
Finally, once you have finished diagnosing your electronic patient engagement project needs, be sure to engage and inform all related stakeholders within your health center so that everyone feels as though they are a part of the solution. Include your patient champions as well! There are many patients eager to participate and who can help inform you of barriers or issues that might not otherwise be considered. It does not mean you have to address every request or desire, but helps you understand the context of your implementation and factors that might slow adoption.
Acknowledgements
Origins and Ongoing Refinement of this Guide: The content in this resource is drawn from and builds on current research, health center use cases, and related U.S. Health IT policies and regulations. The HITEQ Center plans to continue refining this Guide based on input from users like you, so please consider sharing your feedback through the comment form.
The article this framework draws from was originally published in the Journal of Medical Internet Research (http://www.jmir.org), 04.08.2010.
If referencing this work please cite as:
Horan TA, Botts NE, Burkhard RJ A Multidimensional View of Personal Health Systems for Underserved Populations J Med Internet Res 2010;12(3):e32 DOI: 10.2196/jmir.1355 PMID: 20685644 PMCID: PMC2956321