There are no standard conventions for what information a PHR should contain. Some experts believe that, to guide consumers’ care decisions and self management, PHRs should include all relevant medical data.’ Others have expressed the view that ‘more can be less’ as there is the potential to overwhelm users with too much information. The presentation of PHR data in a more easily understood, user-friendly format is crucial. This is particularly important if PHRs are to be relevant to consumers who face literacy and health literacy challenges. Participants in the 2005 American Medical Informatics Association’s (AMIA) College of Medical Informatics working symposium suggested that a PHR should contain at least the following data elements:
AHIMA has also created an excellent resource that includes a comprehensive list of suggested and common data elements by type, (e.g., suggested “Personal Information” elements include name, address, and employer information). Other types of data relevant to health may include cost and payment information, patient-centered health risk assessment, and home and self-monitoring data that have been entered by the consumer or transmitted directly to the PHR from a medical device. Consumers may enter non-coded data (e.g., free text) through means such as typing journal entries into their PHR. They can also upload information into their PHR, such as the phone numbers of health care providers, insurance information, funeral plans, and even documents such as advanced directives.
Some PHRs offer interactive tools that enable consumers to understand and act on their health information (some refer to these additional software tools as ‘personal health applications’. Others use the term PHR-S to refer to applications and data). These functions allow consumers to control their information, utilize decision support, and have more convenient interactions with the health care system. Some functions enable consumers to control access to their PHR information (i.e., by authorizing access for individuals such as relatives, spouses, friends, or health care providers).
Users can also control the type of information that each person is allowed to access, and whether that person has ‘read-only’ or ‘read and write’ access. Some PHRs provide an audit trail that tells the PHR owner who has accessed their information, and when. HL7’s Personal Health Record Systems Functional Model (PHR-S FM) includes PHR functional capabilities in the categories of ‘Personal Health’, ‘Supportive’, and ‘Information Infrastructure’. Each function is listed hierarchically and includes a name, identifier, description, examples and conformance criteria. Johnson et al. name six types of PHR functions:
Some PHRs guide consumers to sources of online health information or disease management programs. Sophisticated PHRs can be targeted to consumers who have specific risk factors or diseases (e.g., obesity, diabetes) and can suggest relevant websites or tools for these patients, or offer web search functions to them. PHRs can also offer access to virtual communities through their portals. These can be particularly useful for patients who have serious or chronic conditions. For example, women with breast cancer may be interested in interacting online with each other to discuss available providers and potential treatment options, and to share the impact of this condition on their personal lives.
Different user populations require tailored functions, depending on their health interests and needs. For beneficiaries over the age of 85 (12 percent of Medicare beneficiaries), an adult, child or other caregiver is more likely to manage the PHR. Similarly, a beneficiary with health problems may want different information and functions than a healthy beneficiary. Customization can be achieved by offering specific information modules, providing individualized plans within a PHR, or by offering specialized PHRs.
The Markle Foundation’s Personal Health Technology Council found that ensuring consumers’ privacy and control over their own records is essential to full consumer acceptance of electronic information exchange and the sharing of PHRs. To guide the development of PHRs, this Council endorsed seven patient and consumer principles intended to ensure that PHRs include the privacy and security functions necessary to alleviate consumers’ concerns about security. The privacy and security principles are as follows:
Exhibit 3 presents a summary of currently available PHR configurations, and the data elements and functions they typically include. It provides an overview of the characteristics of each of these configurations, their advantages and disadvantages, and sponsors. For additional detail on key PHR initiatives, an overview of nine current efforts is provided in Appendix E. Various PHR configurations include:
Exhibit 3 below provides a more detailed overview of each of these PHR configurations:
|Type of PHR
|Institutional/IDN provider portal
||An EHR-tethered PHR allows consumers to view information from their health care provider’s EHR. Such PHRs are typically offered by health or hospital systems or medical groups to their patients (also called members or enrollees). These providers have the advantage of having EHRs already in place and are able to import data directly from their EHR.
||The advantage of an EHR-tethered PHR is that it has access to all of the information contained in the EHR and its link to the EHR makes it relatively easy to include additional PHR functions (e.g., messaging providers, appointment making).
||Such PHRs will only include information from that provider’s system. Because consumers change health plans numerous times over their life, and many receive care from providers who are not linked to the EHR, these records will not be complete, nor will they be transferable to other EHR-PHR systems. Also, because medical and laboratory terminology often differs from that used by consumers (e.g., myocardial infarction vs. heart attack), the information must be translated and presented in consumer-friendly language. There is also a potential issue with providing lab results directly to consumers, as consumers may be unprepared for the results. Moreover, because the EHR data is the providers’ legal record, the consumer may request corrections to information contained in the record, but cannot make them at will.
||Two well-known examples are Kaiser Permanente and the Veterans Health Administration (VHA). A small number of physician groups, such as the Palo Alto Medical Foundation (PAMF), have also made PHRs available to their patients.
|Populated from Claims Data
||This type of tethered PHR is typically sponsored by an employer, health care payer, or insurer. It may provide consumers with three types of data: physician and hospital visits and procedures, laboratory tests ordered, and prescriptions drugs dispensed. Information includes the date of service, type of service, and cost of service. Demographic, health history, and health risk assessment information that is input by the consumer may also be integrated.
||The advantage of a claims-based PHR is that the record is comprehensive, as it incorporates information from all providers who file claims with the payer. The PHR’s information provides a health history that may help consumers to manage their health. In addition, its supporters say that this record contains more information than many patients currently bring to doctor visits, and that it is enough to get a productive conversation started between consumers and their providers. Claims data may also be useful for managing costs and financial decisions. For Medicare beneficiaries trying to manage and pay their bills, PHRs that tell of the amount paid by Medicare, the responsibilities of supplemental payers (employer-sponsored insurance, Medicaid, or Medigap), and their own co-insurance obligations, can be a valuable service.
||The disadvantages of a claims-based PHR are that it does not include findings, results, and recommendations of the services provided (e.g., the name and date of the lab test are included but the test results are not); it does not provide a complete and accurate medical record (e.g., a consumer might have undergone a procedure but been found not to have the condition, diagnoses might not be complete because visits for multiple problems may not code for all, and providers tend to ‘upcode’ for higher reimbursement); its usefulness in real-time medical practice is limited by the time lag that occurs as claims are submitted, processed, and uploaded to the PHR; as with the tethered PHR, the consumer cannot take the PHR if he/she moves to another employer or payer; and the coding nomenclature used for claims is difficult for most consumers to understand, requiring that this information be translated into a vocabulary familiar to consumers.
||Employers: Dell offers its 60,000 employees and dependents a PHR that tracks their insurance claims and drug prescriptions, as well as sends out automated alerts and reminders. For those employees who use its PHR, it provides a credit on health care premiums. Verizon offers a PHR to its more than 900,000 active employees, dependents, and retirees. (Bank of America, IBM, and other large employers do this as well.) Five major employers, Intel, Wal-Mart, Pitney Bowes, British Petroleum America, and Applied Materials, are financing the design of a PHR, Dossia, for their 2.5 million employees, dependents, and retirees. Health insurers have been working to make PHRs available to their enrollees, in anticipation that PHRs will increase consumer and employer loyalty to the insurer and help to control health care expenditures. Aetna provides its members a PHR that includes claims data and performs additional functions, such as sending members messages or alerts when potential care issues are identified. CIGNA HealthCare launched a member website in 2002 and has recently teamed with Intuit to offer Quicken Health to its nine million members. Scheduled to be available to CIGNA members in 2008, Quicken Health will provide tools to help members manage their health care finances and allow them to download and organize personal health claims data. Some of these employers, payers, and insurers contract with vendors that modify a standard version of its PHR, while others develop its own version. Verizon, Dell, PepsiCo, IBM, and three dozen other large U.S. employers contract with WebMD for their PHRs. The five major employers mentioned above began working with the Omnimedix Institute to develop its PHR (Dossia) but after one year started over with a new technology provider, Boston Children’s Hospital Informatics Program for its Indivo PHR. Children’s Hospital is building on Indivo to provide the base architecture for Dossia, and as an open source product, it will be made available to millions of employees of major United States companies.Plans are in the works to improve claims-based PHRs. In 2006, America’s Health Insurance Plans (AHIP) began working with the Blue Cross Blue Shield Association to develop model PHR standards. AHIP has since released PHR technical documents to member health plans with the recommendation of key PHR data elements–including health plan claims, administrative data, consumer-entered data, and portability standards that would allow consumers to take their PHR data with them if they change health plans. Eight plans participated in a pilot and have demonstrated the ability to share data. In addition, new clinical support technology is being developed to compare claims data to accepted clinical guidelines. Also, WebMD has said that it may eventually incorporate information from EHRs into its claims-based PHR.
|Individual provider portal
||Individual provider portals are managed by a central website that provides portals that link consumers with their individual provider’s EMR. This portal provides individuals with a view of some or all of the information in the provider’s EMR.
||Information can be input directly from a provider’s EHR to the patient’s PHR. The PHR is controlled by patients but can be shared by physicians or other caregivers.
||The PHR data are not complete because information from other providers is not incorporated into the PHR. In addition, direct data input from an EMR requires that the provider has an EMR system and that the provider participates in a PHR provider portal system.
||iHealthRecord, an internet-based PHR, is offered by Medum. iHealthRecord includes educational programs specific to the patient’s condition. Medem is building interfaces to EMRs in physician offices and hospitals, as well as links to allow health plans to input data. iHealthRecord also includes secure messaging and online consultation to help patients communicate with their physician.
||Untethered stand-alone or web-based applications are offered by PHR vendors directly to consumers to allow for creation of their own records. AHIMA’s consumer website for PHRs (www.myphr.com) provides information to help consumers select a PHR from more than the 175 PHRs offered by stand-alone vendors.
||Stand-alone or web-based PHR applications may appeal to those who do not have access to a PHR through an employer, payer or provider, and those who choose not to sign up for a sponsored PHR due to concerns of employers or payers having access to their information.
||Reliance on consumers to enter data is considered problematic because consumers lack access to their health information, may enter their information incorrectly, or may never enter their information. Also, health care providers are less likely to trust–and therefore use–information that is entered by a consumer.
||WebMD, the first large-scale, online PHR service, markets PHRs directly to consumers, and employers. Medscape offers users About MyHealth. Also, CapMed offers two untethered versions of a PHR: the first, Personal HealthKey, a portable PHR application, completely self-contained on a secure USB drive, enabling information to be shared and updated on any USB-enable computer; and the second, Personal Health Record, a desktop PHR application, installed on the personal computer with a CD-ROM, supporting mass distribution and initializing user engagement.
||These PHRs are designed for specialized audiences. They may be targeted to populations such as the aged, their caregivers, or speakers of other languages. Such PHRs provide a format for their health information needs, as well as other social and institutional support.
||The needs of a specific population may best be met through a PHR targeted to that population. Language, format, and function can be utilized to meet a broad range of the targeted population’s needs (e.g., power of attorney forms for caregivers).
||Populations are heterogeneous and its needs differ across sub-populations. For example, Spanish speakers are a diverse group, and the Spanish dialects are not standard among the numerous Spanish-speaking countries. Also, meeting the needs of these populations may be challenging to the sponsors and developers of these PHRs, as they are not usually of these populations. For example, the translation of an English PHR into Spanish may be is difficult for non-Spanish speaking developers and sponsors. .
||LifeLedger is a PHR targeted to adult children and other caregivers of the aged, with the intent to communicate information to all involved in the subscribers’ care. It records and stores health records, financial and demographic information, medication histories, funeral plans, and other important documents, such as living wills and health care power of attorney forms. Subscribers or caregivers manually enter the information; in the case of documents, they are uploaded to the personal record. Caregivers and providers may add progress notes. LifeLedger also includes a library, chat room, and forums. Another example is the MiVia PHR. This PHR is designed for Spanish-speaking migrant workers.
||A PHR developed for a specific purpose or function (e.g., nutrition, exercise).
||Provides in-depth information, tools, and modules for a service. These PHRs are particularly effective for those motivated to improve their lifestyle.
||Because these PHRs are targeted to a specific service, they do not include the broad range of interlinking health care service functions. Also, they do not incorporate a broad range of data elements.
||Sponsored by the US Department of Agriculture, Center for Nutrition Policy and Promotion, MyPyramid Tracker is an online dietary and physical activity assessment tool that provides consumers with information on diet quality, physical activity status, related nutrition messages, and links to nutrient and physical activity information. Its Food Calories/Energy Balance feature automatically calculates energy balance by subtracting the energy expended from physical activity from food calories/energy intake. MyPyramid Tracker translates the principles of the 2005 Dietary Guidelines for Americans and other nutrition standards developed by the U.S. Departments of Agriculture and Health and Human Services.
||PHRs have also been developed for persons with chronic conditions. These PHRs generally target those with a specific chronic condition.
||These PHRs typically provide disease-specific information, education, and care management modules. They may also provide a ‘community’ for sharing clinical and provider-related information, as well as a social formation
||By focusing on specific chronic conditions, those with multiple chronic conditions will find their options limited to a single condition.
||The goal of Patientslikeme (patientslikeme.com) is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. Created by a person who was diagnosed with ALS, it has created a platform for collecting and sharing real world, outcome-based patient data, and has formed data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Along with supporting those with serious chronic conditions, its greater purpose is to speed up the pace of research and improve the health care system. Unlike most health care websites, Patientslikeme operates with an openness philosophy regarding privacy. Its website states that sharing health care experiences and outcomes “is good”, because when patients share real-world data, “collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible.” Another example of a condition-oriented PHR is The Smart PHR’s Cancer Life Agent, a web-based PHR created and controlled by consumers but accessible with permission by the provider. A care management plan module is included.
|Health 2.0 sites
||Health 2.0 focuses on user-generated aspects of Web2.0 within healthcare but not directly interacting with the mainstream health care system. These sites typically include a) search, b) communities, c) tools for individual and group consumer use.
||These sites have been developed by and created for consumers. Because these sponsors are generally attuned to the needs of their users, they more closely align with their psycho-social needs.
||They have not connected Health 2.0 user-generated content to the wider health care system.
||One new Health 2.0 site is Sophia’s Garden. This is an online community for families of children diagnosed with life-threatening conditions. Sophia’s Garden was designed by parents who had a child diagnosed with a life-threatening condition. Its first initiative was to create an integrated, Web-based survival kit for families of children afflicted with such conditions, Healing in Community™ Online, that informs, supports and enables families to harness the power of community to address all of their needs–physical, emotional, financial, social, cultural and spiritual.
( “networked” model)
|This model of PHR connects the PHR with multiple health care data sources in the context of a health information exchange organization
||Connecting for Health and other PHR experts believe that only a networked PHR has the potential to offer consumers an electronic health information environment that lives up to its set of consumer- and patient focused principles for the handling of electronic personal health information. Such linkage is said to be key to providing the level of portability, long-term history, and up-to-date information necessary to make the PHR useful for consumers.
||Non-standardization of data elements and systems and the low proportion of providers using EHRs (14 percent of all provider practices) makes this model untenable at this point in time.
New PHR configurations are also emerging from the models seen today. Health record banks are consumer-controlled repositories that hold complete copies of consumers’ medical records. PHRs such as HealthVault are blurring the distinctions between PHR configurations. The data in HealthVault may be entered by the consumer, or entered via an EHR, claims database, or a medical device. The record is owned by the consumer, who controls access to it. Adding to the complexity, organizations are partnering with Microsoft to build other PHR solutions on top of the HealthVault infrastructure. For example, Whatcom County’s Regional Health Information Organization (RHIO) is expanding the capability of its PHR called SharedCare Plan by using HealthVault’s capability to link the PHR to biomedical devices. Google is preparing to release Google Health. In 2008, Google announced that the Cleveland Clinic will test a pre-release version of this service.
It remains uncertain how PHRs will look in five to ten years, but it is clear they will differ significantly from the PHRs of today. In the future, PHRs may provide a lifelong record of consumers’ health, including all relevant and important health information. They may be accessible at the consumer’s direction, while maintaining appropriate privacy and security precautions. It is also plausible that PHRs could enable lay-people to make their wishes known. For example, they could provide guidelines that could be transmitted to EMRs, ensuring that treatments provided are consistent with the consumers’ wishes, desires, and preferences. PHR functions could also include the electronic expression of the individuals’ preferences for privacy and for disclosing health information into computable forms. With respect to evolving models, Patricia Brennan notes that, ‘PHRs can be viewed from an architectural perspective, having a data source or repository, a set of mediating functions, and an applications interface. IN some PHRs all three components are wrapped up in a single product; others have the ability to draw data from and put data into various data stores; these may employ the mediating functions, specific decision logic, or interesting interfaces that help people take health action.’