Literature Review and Environmental Scan: Evaluation of Personal Health Records Pilots for Fee-for-Service Medicare Enrollees. Findings


In synthesizing lessons learned from the literature review and key informant discussions, this analysis focuses on issues in four key areas: (1) PHR definitions, attributes and models; (2) consumers and PHRs; (3) standards for PHRs; and (4) potential impacts of PHRs. Select findings of the review are presented below.

While the findings of the report provide a broad current state analysis on the PHR field, to the extent possible the specific needs of the Medicare population have been researched and documented. When developing PHRs for senior citizens such as Medicare FFS Beneficiaries, a number of factors must be taken into account including the demographics of the population, their levels of computer and health literacy, and their predominant health issues. Medicare beneficiaries are more likely to have impaired vision and mobility, as well as other health problems that can impede their use of PHRs.[1] They may also face challenges in reading and comprehending information in PHRs due to levels of literacy and health literacy.

PHR Definitions, Attributes, and Models. Although there has been a groundswell of interest in PHRs, consensus has not yet been reached on a commonly accepted definition of a PHR, and many proposed definitions remain vague. One definition of a PHR, as proposed by the Markle Foundation states: ‘A PHR is an electronic application through which consumers can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment.’[2]

There has also been significant debate among experts on the different models for PHRs and how they should be structured, what functions they should deliver, or how they can be of greatest use. While a broadly accepted taxonomy of PHR models has not been established thus far, the different ‘flavors’ of PHRs that exist today include:

  • Institutional/IDN provider portal
  • Populated from claims data
  • Individual provider portal
  • Untethered–USB, desktop, PDA
  • Service oriented
  • Population oriented
  • Condition oriented
  • Health 2.0 sites
  • Network/Interconnected PHRs

Given the rapidly evolving PHR market and the entry of organizations like Microsoft and Google, it is likely that the PHR landscape will be dramatically different 5-10 years from now.

While organizations such as American Health Information Management Association (AHIMA) and Office of the National Coordinator for Health Information Technology and the National Alliance for Health Information Technology (ONC-NAHIT) are working to define PHRs in terms of their use, objectives, and ownership rights, other organizations such as the Robert Wood Johnson Foundation (RWJF) have defined criteria for the functional components and platforms of PHRs. In fact, the PHR industry has gone to great lengths to separate a PHR definition from the description and characteristics of functionality and data sources. The National Committee on Vital and Health Statistics (NCVHS) proposed using the term PHR to refer to a health or medical record that includes clinical data, and the term ‘personal health record systems’ (PHR-S) to refer to multi-function tools that include PHRs among a battery of functions.

PHRs may encompass a number of functions, providing consumers with the ability to control their information, manage their health through decision support tools, interact with their health care providers, and authorize access and use of their health information through a designated proxy or care manager.

Findings of this review suggest that consumers have diverse expectations and needs for PHRs. Accordingly, certain health information and supporting features and functions may be more relevant to some users than others. In particular, health status may play a role in the functions that Medicare beneficiaries desire in a PHR. Although only a subset (15%) of community-dwelling, elderly patients require care from a geriatrician or geriatric services, many of those seniors have multiple, chronic conditions. By age 75, the average older adult has between two or three chronic conditions, and some have ten or twelve chronic conditions.[3] Thus the elderly and disabled may require different functions and features of a PHR than other consumers.

PHRs can be customized by offering specific, health-related information modules; providing templates for creating individualized care plans, or by offering a fully specialized PHR. There is no ‘one size fits all’ PHR and it is likely that there will be different flavors of PHRs to support unique user needs. To some extent consumers’ expectations and needs are being met by a variety of organizations including independent software vendors developing stand-alone solutions, providers/Integrated Delivery Networks making available PHRs that are closely tied or tethered to their existing systems, or health insurers or employers offering claims-based PHRs.

Consumers and PHRs. In order for PHRs to gain widespread adoption, consumers must be made aware of the availability and advantages of using PHRs, and they must be taught how to use them. Recent research on public attitudes suggests that although only a small percentage of the population has used a PHR, consumers are interested and willing to use PHRs. Additionally, those with chronic conditions reported the highest interest and most urgent need to use PHRs.

Although consumers express interest in PHRs generally, consumers cite major concerns around the security and confidentiality of information contained in PHRs, and this may affect whether or not consumers decide to use a PHR. However, these concerns vary depending on the PHR sponsor. For example, one study indicated that consumers are more likely to use a PHR if it is recommended by a provider. Although some studies suggest that consumers would be particularly concerned about the security and privacy of an employer-based PHR, others suggest that when financial incentives are provided consumers are significantly more willing to use these PHRs. Consumers also seem to suggest that the convenience of access to their information would outweigh their concerns.

PHRs may be particularly useful for Medicare beneficiaries. Early research indicates that improvements have been observed in care management for various chronically ill and disabled populations that have used PHRs. For chronically ill and disabled patients PHRs assist with medication reminders, better tracking of special diets and enhanced communication with providers. For cognitively impaired patients, PHRs which contain health event reminder functions (such as reminders for health care visits or daily medication regimens) and tracker tools may assist consumers with memory problems. In one study, generally healthy consumers reported forgetting to ask health related questions during provider visits that they had intended to discuss. Thus, PHRs could result in more productive interactions with providers.

State, regional, and national efforts that offer social marketing campaigns to encourage PHR use may help raise awareness of their value. Consumer perspectives must be taken into consideration when defining the attributes of PHRs. NORC’s discussions with PHR experts indicated that a user-centered approach to developing PHRs seeks to align the conceptualization and design of PHRs with consumers’ needs. Taking into account the consumer’s viewpoint will create PHRs that are valuable and easy to use. User-centered designs ensure that consumer perspectives are incorporated into PHRs, greatly impacting their successful adoption and use.

There has been a limited amount of work thus far to measure PHR usability. In addition, usability guidelines specific to PHRs have not been developed and traditional usability theory and existing guidelines have limited applications to PHRs because PHRs vary so widely in terms of configuration and features and functions which they offer. However, web usability guidelines have been written for aged, disabled and limited literacy populations, and these may be helpful in developing PHRs which meet the needs of Medicare beneficiaries.

Today there are no standardized measures for PHR utility. According to experts, potential measures of PHR utility include the number of consumers consistently using their PHR; the number and types of data elements or functions that are accessed and consistently used; and the overall quality improvement of the consumer’s health through PHR use.

Standards for PHRs. Standards (a set of rules that ensure that personal health information can be easily stored, accessed, shared, exchanged, and understood by health care providers, payers, regulators, and consumers[4]) are recognized as the key to realizing the value of PHR technology. Standards provide the basis through which different EHRs, claims and other data sources will be able to populate a PHR.

There are a number of entities involved in developing standards for PHRs and standards are currently available for data transfer, semantic interoperability, security and portability. One key informant suggested that between 70 and 80 percent of the standards developed for EHRs are relevant and potentially transferable to PHRs. Standards for semantic interoperability are becoming increasingly available, as are a number of security standards for authentication, consent, confidentiality, accountability, and non-repudiation. Organizations such as Integrating the Healthcare Enterprise (IHE) and Health Level Seven (HL7) have been, and are continuing to develop portability standards for plan-to-plan transfer of information.

While a number of standards for PHRs have already been developed, there are some important gaps that will need to be addressed to support development and use of PHRs. Currently there is no uniform standard to protect privacy of personal health information stored in a PHR. There are several other gaps in the PHR standards development space, most notably in the following areas: standards for patient-initiated changes to their health information; uniform privacy policies for PHR service providers; standards that address when a consumer’s proxy or care manager accesses, uses, and controls the account holder’s PHR; standards for consumer entered information into PHRs; and definitions of the rights and legal responsibilities of all parties involved with PHRs. PHRs are now being offered by entities that are not covered by HIPAA and are thus not required to comply with HIPAA regulations. Privacy policies and security standards for these entities will need to be developed.

There are also areas of overlap in the standards development area today. These areas include PHR portability standards, conditions and diagnosis standards, and consents standards. Despite the many areas of overlap as well as gaps in standards for PHRs, there are a number of standards organizations that are looking at issues of PHR privacy and security, and interoperability and portability. AHIMA is currently working on a project for ONC-NAHIT to explore the different initiatives and their areas of overlap.

Potential Impacts of PHRs. Findings from key informant discussions suggest that PHRs could have significant implications for providers and the wider health care system. For example, implementers of PHRs will need to carefully consider the optimal process for integration and application of PHRs into the workflow of routine clinical practice. While some providers recognize the potential utility presented by PHRs – particularly in the areas of patient engagement and chronic disease management – others are more resistant to change, and are concerned about the impact on workflow, PHR data accuracy, and lack of reimbursement for PHR-related work. Kaiser Permanente has found that providers are resistant to PHRs before using them, but after having used the PHRs they report positive impacts on relationships with patients, and that their initial fears of things like receiving overwhelming amounts of emails from patients were false. Many providers reported a reduced number of emails from patients with continued use of the PHR. Thus, PHRs may produce benefits for providers such as better communication with patients. Overcoming initial preconceived notions regarding the utility of PHRs may be a significant factor in improving provider adoption of PHRs.

A number of major employers have embraced PHRs and the broader idea of patient access to records and communication channels. Currently, empirical evidence of return on investment, quality improvement and improved efficiency is scant. Nonetheless, many expect that PHRs will positively affect these aspects of the health care system. Numerous experts believe that PHRs will increase patient empowerment, improve medical record keeping, and increase communication between patients and providers. Furthermore, many experts believe that improved medical record keeping as a result of PHR use could lead to reduced health care costs through a reduction in unnecessary hospital visits and tests, and fewer medication errors.

The present PHR evaluation seeks to establish an understanding of PHR utility for Medicare beneficiaries in order to address potential impacts. However, additional PHR implementations and research will be necessary to better understand how providers can effectively incorporate PHR technology into the provision of care, and how PHRs will more broadly impact health care system.

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