Objectives: The Medical Library Association (MLA)/National Library of Medicine (NLM) Joint

OBJECTIVES
The Medical Library Association (MLA)/National Library of Medicine (NLM) Joint Electronic Personal Health Record Task Force examined the current state of personal health records (PHRs).


METHODS
A working definition of PHRs was formulated, and a database was built with fields for specified PHR characteristics. PHRs were identified and listed. Each task force member was assigned a portion of the list for data gathering. Findings were recorded in the database.


RESULTS
Of the 117 PHRs identified, 91 were viable. Almost half were standalone products. A number used national standards for nomenclature and/or record structure. Less than half were mobile device enabled. Some were publicly available, and others were offered only to enrollees of particular health plans or employees at particular institutions. A few were targeted to special health conditions.


CONCLUSIONS
The PHR field is very dynamic. While most PHR products have some common elements, their features can vary. PHRs can link their users with librarians and information resources. MLA and NLM have taken an active role in making this connection and in encouraging librarians to assume this assistance role with PHRs.

The PHR inventory database evolved during the process of identifying PHRs.Task force members discovered that, in some cases, different health systems were using the same PHRs and some entries had to be merged.Also, after further investigation some of the assigned PHRs did not actually meet the task force's working definition or were no longer viable.To maintain a record of these nonviable PHRs, a note was created in the database.Any PHR that was tagged as not meeting the definition went into a separate area of the database.In general, websites did not provide all the information required to complete each field in the database.When a representative for a PHR could not be reached, some fields were left blank.Fields were also left blank if the person contacted could not provide particular pieces of information, such as marketing data or technical information about software and security.Marketplace penetration, for example, was considered proprietary information by many vendors.
After collecting data for a number of PHRs, the group asked for assistance in identifying additional or missed PHRs; informal calls for information were placed on appropriate email discussion lists and in a special edition of MLA-FOCUS, MLA's online member newsletter [7].Email discussion list members were asked to submit additional PHR products not named on a provided list of identified viable PHRs.New PHR products continued to enter the market, but the task force set a date to stop gathering data so that analysis of the collected data could commence.

RESULTS
The task force initially identified 85 PHR products, but the working list increased to 121 after all data gathering was completed.Ultimately, 117 PHR products were entered into the database after eliminating duplicates.Of those, 91 both met the task force's definition and were currently available.The remaining 26 did not meet the working definition, had not yet been implemented, or were defunct.Contact with an actual representative, either by telephone or in person, was attempted for all the PHR products on the working list and was successful for 55 of the PHR listings.Information for the remainder was gathered from whatever data were available at their websites.
Findings provided a snapshot of the state of PHRs at a given time.As shown in Figure 1, many of the PHRs were standalone products (non-tethered) with all information self-entered by the consumer.
Others were integrated with official EHRs (tethered) offered by a health care provider or insurer.Some PHR vendors provided both standalone and integrated versions of their products, depending on whether the vendor was working directly with a patient or with a health care provider who, in turn, made the product available to patients.Features varied, such as whether or not prescription refills were available through the PHR and whether or not secure messaging between providers and patients was available.Some PHR products actually allowed patients to see portions of their official EHRs.The purpose also varied from one product to another.While a number of PHRs offered an overall health history to simplify health information exchange, others focused on a particular aspect of health, such as chronic pain or end of life issues, or on a specific population, such as children or migrant workers.The task force found that some PHRs were available for anyone who wishes to use them.Others required enrollment in a particular health plan and/or under a particular employer or with a particular provider.In these cases, vendors might have reported that they were "open to all," meaning "open to all in their system," rather than open to the public.Many PHRs were free to consumers, such as those that were on the web where information was self-entered.The PHRs that charge consumers were mainly those that offered special formats, such as CDs, flash drives, bracelets, or wallet cards.Health providers, insurers, and employers who offered PHRs to users often paid the PHR providers but did not pass along a charge to their users.Some health systems developed their own PHRs.
Approximately half of the examined PHRs contained consumer health information (CHI), as shown in Figure 2. The most commonly linked CHI resource was MedlinePlus, followed by Healthwise, information from medical societies or organizations, and vendor-developed content.Aside from societal information and vendor-developed content, the CHI resources included:  Of the currently available PHRs examined, the majority operated on a web-based platform.As shown in Figure 3, fewer than half were available for use with mobile devices.A portion of those were initially sold as mobile devices, such as flash drives that were incorporated into bracelets or wallet cards.
These were mainly for use in emergency situations.As smart phones become more prevalent, there may be more demand for access to PHRs on these devices, but none of the vendors mentioned specifically targeting their products toward mobile devices.
Security is an important issue for protecting the privacy of personal information in PHRs.Many of the web-based products used secure socket layer (SSL) to enable encryption.A number of them specified the VeriSign certificate authority, often seen when making online purchases with a credit card.

DISCUSSION
During the course of its work, the task force has found that PHRs can be quite different from one product to another.As noted by the National Committee on Vital and Health Statistics, PHR attributes can vary by: the scope or nature of the information and contents the source of the information the features and functions offered the custodian of the record the storage location of the contents the technical approach the party who authorizes access to the information [8] Even the simplest ones can be invaluable to consumers who need a central place to keep their medical histories, easing the pain of filling out forms when visiting a new provider.One of the products actually calls itself "NoMoreClipboard!" Project Health Design, sponsored by the Robert Wood Johnson Foundation, has made interoperability a major focus in its development of a common platform for personal health applications.

The Common Platform Components software is now available under an open source license [9].
Interoperability will be an important factor in any widespread adoption of PHRs.Commission issued a final rule, as part of the American Recovery and Reinvestment Act, requiring webbased businesses to notify consumers when the security of their electronic health information is breached [16].

Librarians' roles in personal health records
In addition to assaying the current state of PHRs, the task force tried to identify ways in which librarians could provide assistance to consumers in finding reliable health information in the context of the PHR.
PHR users who are online may be consulting questionable sources such as wikis, blogs, and social networking sites [17].The task force began drafting a statement that could be inserted in PHRs to alert users that they can obtain information from authoritative resources such as NLM's MedlinePlus [18] and those listed at MLA's Consumer and Patient Health Information Section website [19], as well as through direct contact with medical librarians.Email and telephone conferences with task force members were used to refine the statement.A plain language expert at NLM was also consulted, and, as a result, the statement's length was abbreviated.The assistance statement reads:  Medical librarians can help you find other health information.To find a medical librarian near you, call 1-800-338-7657 or view http://www.nlm.nih.gov/medlineplus/libraries.html.Librarians will not provide personal medical advice, but they will find trusted information about drugs, conditions, procedures, lab tests and other health topics.
PHR providers have been contacted and asked to embed the assistance statement in PHRs so that users could connect to quality resources endorsed by medical librarians or obtain help directly from medical librarians in finding answers to their health-related questions.Working with vendors to incorporate the assistance statement into their PHR products is ongoing.During the term of the task force, a small test was conducted with seven vendors.A letter signed by the president of MLA and the director In a paper on the governance for PHRs, Reti et al. found, that among the organizations with more than 10,000 registered PHR users, only the Department of Veterans Affairs included librarians in the PHR governance structure.However, Medem did include an informatician, and several others reported including chief information officers, who might or might not have been informaticians [20].Curious as to additional roles, the task force conducted informal surveys via selected email discussion lists and MLA-FOCUS [7].Librarians were asked if they currently played a role with PHRs and, if so, what that role was.Responses included the following:

Training of librarians
The task force felt that any training or education provided to librarians needed to focus on building an awareness of PHRs and alerting librarians that they might be contacted for information as a result of the inclusion of the assistance statement in PHRs.For more formal education specifically related to awareness of the assistance statement, two presentation slides were developed and delivered for use in MLA-sponsored and NLM-sponsored courses that have a consumer health information focus.The PHR field is very dynamic and rapidly evolving.Moore states, "The PHR market remains an elusive, challenging market to understand and predict its future outcome" [21].Involving and empowering the patient are trends that will continue, not fads that will fade, as health care strives to be more patient centric.Whatever happens with the PHR market, the adoption of PHRs does create the possibility of new roles for health sciences librarians.PHRs will continue to evolve and will become more standardized as regulations and legislation governing them go into effect.These products will be required to meet standards for interoperability, transferability, and security.As the field further develops, there may be fewer vendors of PHRs; the smaller vendors may not be able to maintain a place in the market.

CONCLUSIONS
Regardless of the number of vendors, as PHRs become more widely adopted, patients will be empowered by being better informed.
While non-tethered PHRs can be useful, PHRs are more powerful and beneficial when integrated with the EHR [22].According to Halamka and colleagues, "The increasing prevalence of personal health records over the next five years will create many policy and technical challenges for healthcare institutions, payers, and employers.However, it may also provide a great opportunity" [23].As patients seek assistance in enrolling in PHRs or in finding health information while using their PHRs, health sciences librarians will find that they have another venue for providing quality information for improved health.
PREPRINT J Med Libr Assoc Jul;98(3) www.mlanet.org© Jones, Shipman, Plaut, Selden 2010 A number of the existing PHRs used particular standards and might employ more than one standard.Others indicated that they were monitoring the development of standards and would adopt them in the future.Standards might be related to structure of the records or to the nomenclature used by the records.Structural standards (some of which were subsets of one another) that were specifically mentioned by the PHR vendors were: Continuity of Care Document (CCD) ASTM Continuity of Care Record (CCR) Clinical Document Architecture (CDA) Digital Imaging and Communications in Medicine (DICOM) Good Electronic Health Record (GEHR) Health Level Seven (HL-7) Nomenclature standards mentioned by the PHR vendors were: International Classification of Diseases (ICD-9-CM/ICD-10) Systemized Nomenclature of Medicine (SNOMED) Vocabularies contained in the Unified Medical Language System (UMLS) PREPRINT J Med Libr Assoc Jul;98(3) www.mlanet.org© Jones, Shipman, Plaut, Selden 2010 While the vendor representatives sometimes could not name any security features beyond requiring password access, others mentioned protected servers, firewalls, and compliance with the Health Insurance Portability and Accountability Act (HIPAA).
PREPRINT J Med Libr Assoc Jul;98(3) www.mlanet.org© Jones, Shipman, Plaut, Selden 2010 vendors [14].However, the US government has since begun to make PHR consumers aware of privacy issues and to protect them.In May 2009, the Office of the National Coordinator for Health Information Technology began a project to develop an online model for PHR providers to present data regarding their privacy, security, and information management policies [15].In August 2009, the Federal Trade
PREPRINT J Med Libr Assoc Jul;98(3) www.mlanet.org© Jones, Shipman, Plaut, Selden 2010 of NLM was sent to these vendors in summer 2008.Three responded positively on behalf of four products: Medem: iHealth Record Tolven: ePHR Access Strategies: Follow Me and MiVIA Demonstrating again how dynamic the PHR field is, Medem's iHealth Record has already been sold to another vendor, Medfusion.
PREPRINT J Med Libr Assoc Jul;98(3) www.mlanet.org© Jones, Shipman, Plaut, Selden 2010 assisting patients with registering for PHRs training employees in the use of PHRs educating staff on how use of PHRs might reduce costs, inform consumers, and benefit the institution incorporating information about PHRs into academic courses helping implement patient portals that include PHRs selecting and evaluating consumer health content to be included in personal health records The task force's own suggestions for possible roles included: coordinating with health information management professionals responsible for PHRs assisting health care providers in adopting the use of PHRs providing PHR vendors with information regarding the UMLS and how it can be integrated into PHRs promoting the use of PHRs through consumer outreach efforts to build trust and acceptance PREPRINT J Med Libr Assoc Jul;98(3) www.mlanet.org© Jones, Shipman, Plaut, Selden 2010