The introduction of web-based personal health records (PHR) hails an emerging era in healthcare that promises to revolutionise communication between patients and their clinicians. The Markle Foundation Connecting for Health Collaborative defines the PHR as an "internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it"—in essence, a "communications hub" controlled by the patient. Offering patient-empowering features such as online appointment calendars, patient-provider messaging, and the capability for patients to view and annotate their health records, the PHR has the potential of leveraging information to provide new avenues for measuring health and service outcomes over time. Conceivably, PHRs will also help to forge the important link between the provision of information and improved health. As the PHR gains momentum and the patient role evolves, survey findings corroborate consumer interest in maintaining their own health records.

Sharing Patient Information — the Interest

A recent United States HarrisInteractive® survey revealed that 42% of adults keep a personal or family health record and that 84% felt it would be a good idea to have such a record. Notably, 86% stated that they keep their personal or family health records as a file/files or in a drawer, with only a small proportion (13%) keeping an Electronic Health Record (EHR) and only 1% as a health record website, such as MyDocOnline™. However, of those not already using electronic records, 40% indicated that it was somewhat or very likely (40%) that they would "start a new electronic health or medical record that is either computer-based or online."

In June 2003, the Foundation for Accountability conducted a national survey of 1,246 online households to determine perceptions of the PHR. Over 70% believed the PHR would improve the quality of healthcare; over two-thirds would use PHR features if they were available, particularly frequent users of the healthcare system and those with chronic illness. Findings from these surveys underscore the interest in an electronic solution that could eventually provide a complete, coordinated, legible and accessible record that helps narrow the information gap in healthcare.

As an adjunct to a clinician or organisation-bound electronic medical or patient record (EMR or EPR), the PHR offers a person-centered system that captures information not only from multiple EMRs but also directly from patients. This enables, for example, inclusion of not only what medications were prescribed, but also whether the prescriptions were filled, completed, and associated with any adverse reactions. Other key attributes of the PHR include patient control of the record (with clinicians and health care organisations as 'custodians' of the data), inclusion of lifetime health information from all care providers, secure accessibility from any place at any time, private and secure records, a transparent access trail, and easy exchange of information across health information systems and professionals.

Personal Health Records – The Response

The growing interest in PHRs has led to the development of national level as well as smaller scale initiatives. These provide instructive examples on the journey toward wider adoption of the PHR.

HealthSpace (UK)

The mandate for greater accountability and public involvement is being addressed in the UK through a variety of initiatives underpinned by a developing electronic infrastructure. A key component of the NHS Care Records Service is evolving toward a comprehensive electronic record that will provide secure and accessible health information to professionals and patients across the nation. Eventually patients will be able to electronically access those records via HealthSpace (http://www.healthspace.nhs.uk), a secure, customisable web space for storing and accessing personal information.
The National Programme for IT (NPfIT), now called NHS Connecting for Health, describes HealthSpace as an online personal health organiser providing an integrated, secure patient portal into NPfIT services through a simple, user-friendly interface. Using HealthSpace, users of the health services will be able to "tailor information and services to their own healthcare needs and wishes." Over the next few years, targets for HealthSpace include capacity beyond the currently available organising features (e.g., appointment calendar and reminders) to include more comprehensive clinical content and functionality (e.g. access to nominated pharmacies).

HealthSpace in effect apportions to patients the responsibility for their own information. This premise is surprisingly similar to the concept of a "health information bank" which Dr. Bill Dodd, a Scottish GP suggested almost 10 years ago. Dr. Dodd's vision was that information would be shared through a variety of 'transactions' based on expressed patient consent. In his analogy, the "bank" would contain an extract or summary of a patient's record to which the patient could grant access as needed. The bank would serve as the summary lifetime health record containing pointers to locations (e.g., a clinic) holding more detailed information about care episodes. Bill Dodd viewed this approach as an important adjunct to enhancing healthcare quality and empowering the patient. He noted that the bank could administer many existing NHS functions as a means of achieving greater efficiencies in care delivery. In keeping with the UK's national information strategies, HealthSpace might be seen as bringing the health service one step closer to Dr. Dodd's vision.

U.S. iHealthRecord

Since President Bush's April 2004 call for automated medical records within 10 years, the United States federal government has appointed a National Coordinator for Health Information Technology (HIT) and laid out a framework for HIT and EHR development. Concurrently, the National Health Information Infrastructure is intended to "improve the effectiveness, efficiency and overall quality of health and healthcare in the United States." The scope of the NHII embraces the notion of a consumer-controlled, confidential Personal Health Record.

One example of such a record is iHealthRecord (http://www.ihealthrecord.org/), available at no cost to any individual in the U.S and launched on May 9, 2005 by Medem Incorporated, the creator of the nation's "premier physician-patient communications network designed to facilitate online access to information and care for more than 90,000 physicians, their practices and their patients." Medem is comprised of a partnership between 47 medical societies (including the American Medical Association). More than 10,000 Americans built an iHealthRecord during the first few weeks of its initial availability.

Patients retain control and responsibility to initiate their own iHealthRecord, which will eventually include interfaces to EMRs and health plans. Existing interactive features provide in-time communication (secure email and online consultation with physicians); push services (automatic medication recall warnings via email, automatic education programmes tailored to individuals, online reminders); and improved access to records (ability to share health records with family members, ability to access personal medical information stored in one place from anywhere at any time, ability to access the iHealthRecord in an emergency, a wallet card providing emergency contact information).

Drawing further on the Dodd banking model, it is conceivable, as Ramsaroop and Ball proposed in 2000, that e-commerce advancements may in fact enable a "universal access card" as the new currency that will transform healthcare by leveraging the same trust consumers confer to banks. This "health card" would operate like an ATM card and facilitate deposits, withdrawals and transfers of selected information to and from a "Personal Health Account" at the "Bank of Health." Importantly, rights to consumer privacy and choice would remain intractable while enhanced empowerment and convenience for consumers would encourage participation.

Other PHR Initiatives

The Personal Internetworked Notary and Guardian (PING) out of the Informatics Programme at Boston's Children's Hospital is a web-based and patient-controlled personal medical records system. It integrates data from multiple care centres and networks, providing patients and families with a confidential and collaborative means of managing their clinical documentation. Its founders contend that the keys to a successful PHR include patient control over permissions, safeguards to protect patients, and interoperability (data can be included from multiple sources) facilitated by data exchange using public/open standards.
Another example—My CARE Source—soon to be expanded to include patient access to online lab results and electronic health records, offers an enhanced "portal" to personalised disease management support for cancer patients at Grand River Hospital in Kitchener, Ontario, Canada. Patients can track and monitor symptoms and/or side effects of treatment by accessing personalised dynamic care plans. Validated health information and tracking tools promote informed choices and instill a sense of autonomy and control.

The Department of Orthopaedics and Sports Medicine along with researchers at the University of Washington, Seattle, has developed the Patient Health Information Management System (PHIMS). Linking a lifelong personal health record with a referral system, PHIMS permits patients to request consultations and be accurately matched with an appropriate specialist. Not only can patients manage their general information and record details of medical problems over time, but consulting physicians are able to review information and clarify details with a patient prior to a scheduled appointment.
Although these projects represent only a sampling of PHR-related initiatives that have been implemented over recent years (see http://www.informatics-review.com/records.html for additional examples), they adequately demonstrate common drivers guiding PHR development. Namely, paper records are becoming increasingly fragmented and unwieldy, consumers are demanding better access to personal health information, and as Ramsaroop and Ball point out, there is an obvious need to "leverage an underutilised partner—the patient—to achieve better care at lower costs."

Views on the PHR – The Reaction

A recent study by Earnest evaluating a clinical trial of patient access to an online electronic medical record found that all participating clinicians, despite initial misgivings, later believed that the process had been empowering for patients and supported the idea of access to records. More specific to the PHR, surveys of iHealthRecord users indicated that 90% found the tool easy to use, valuable and would recommend it to a friend. Furthermore, in the U.S., physician liability companies are endorsing and promoting the iHealthRecord because it decreases clinician liability through improved documentation, automated patient education and automated patient notification for product recalls or warnings.

Benefits of the PHR are already apparent. Ross and Lin note that the most consistent finding across studies of patients having access to their medical records is enhanced doctor-patient communication. In turn, better communication bolsters trust, which Kirshner cites as "perhaps the most significant and influential component of the patient-doctor relationship." Winkelman contends that trust motivates self-care and is pivotal in determining whether a patient merely "looks at" or "uses" his or her medical records.

PHR Development and Outcomes – The Result

Future uptake and success of the PHR now depends on further evidence-based planning, pilot implementation and comprehensive evaluation. Long-term outcomes await the perfusion and evaluation of the PHR on a broader scale. Delineation of issues around definitions, content, privacy, security, technology, interoperability, access, workload, funding, business cases and topics for research (see http://www.ncvhs.hhs.gov/050427p5.htm) still remain. In the interim, published findings from early PHRs are available to inform new initiatives regarding important critical success factors. Some of these key findings are:

• Development should emanate from sound theoretical models of patient motivation that incorporate determinants of patient-perceived usefulness—e.g., illness ownership, patient-driven communication, personalised support and mutual trust between physicians and patients (Winkelman).
• Dependable high-level PHR functions such as providing web-based access to personal medical information require robust enabling feature sets -- e.g., access via secure password and the capacity to provide authorised provider access and directed emergency access. (Kim and Johnson).
• Progress requires a collaborative organisational culture, recognition of patients as partners, and a focus on human factor elements more than on environmental factors such as regulations. (Winkelman and Leonard).
• Ongoing consultation between patients and interface designers is an important component of a patient-centered approach to design and development (Winkelman and Leonard).

As Detmer found, evaluating PHR initiatives using a sound evaluation framework is essential to linking "informing" to outcomes". Measuring outcomes must also recognise that the PHR itself comprises an 'intervention' with accompanying ethical considerations such as potency of the dose and corresponding impacts on patient health.

PHR and the Future—All for one and one for all

According to Harry Cayton, the UK's National Director for Patients and the Public, "Without information there is no choice." However, information provision alone is inadequate. In his speech 'Hearing the patient's voice – supporting the patient' in October 2002, he was quick to point out the historical power imbalance in the traditional image of healthcare—dialoguing clinicians dressed in white, stethoscope in hand, with the patient listening attentively and wearing "disempowering nightclothes." In information terms, this one-sided 'all for one' portrayal neglects the importance of synergistic dialogue between clinician and patient. In order for information to "give patients the power and confidence to engage as partners with their health service", patients must be actively involved in decision making. This balanced approach is key to empowering one (the patient) for the welfare of all—namely, optimising the efficiency and effectiveness of healthcare for better health outcomes.
Cayton goes on to indicate that, to the benefit of clinicians and patients alike, an encouraging new relationship is being forged "between people and the knowledge the health service holds. The future is about sharing – sharing of information, sharing of decisions and sharing of responsibility." The emerging face of patient empowerment is slowly beginning to permeate virtually all aspects of healthcare delivery, from policy setting to record keeping.

In this developing patient-shared information management model of healthcare, information is therapy. The "Center for Information Therapy" (http://www.informationtherapy.org/) defines Information Therapy, or Ix®, as "the prescription of evidence-based information to a specific patient just in time to help him or her improve a self-management behavior or a medical decision as a part of the process of care." Some physicians in the UK and the U.S. now provide "information prescriptions" to their patients in order to ameliorate what Ann Gordon describes as "information erosion" when a patient leaves the doctor's office.

Regardless of the future evolutionary path of the PHR—its success, relevance and usefulness hinges significantly on the actualisation of human factors such as patient involvement in design and development and alignment with trust relationships between patients and physicians. Optimal health outcomes depend not simply on the provision of information, but on the balanced leveraging of information as the dynamic nexus for these human relationships.

REFERENCES

• Cayton H. Introduction to "Better Information, Better Choices, Better Health: Putting Information at the Centre of Health." Department of Health, UK. December 16, 2004.
• Cayton H. Supporting the Patient. Speech at the NHS Alliance Fifth Annual Conference: 'Hearing the Patient's Voice—Supporting the Patient.' October 18, 2003. Available at: http://www.dh.gov.uk/NewsHome/Speeches/SpeechesList/SpeechesArticle/fs/en?CONTENT_ID=4000799&chk=vuulnA
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• Dodd B. An independent 'Health Information Bank.' British Journal of Healthcare Computing. Vol. 14, No. 8, October 1997.
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• Gordon, Ann B. Information Therapy Helps Improve Care. The Quality Indicator. December 2003. Available at: http://www.qiphysician.com/common/pdfs/QIPHY1203.pdf
• IHealthRecord FAQs. Available at: http://www.ihealthrecord.org/faq.html
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• Kirshner M. The Role of Information Technology and Informatics Research in the Dentist-Patient Relationship. Advances in Dental Research. Vol. 17, December, 2003:77-81.
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• Markle Foundation. Connecting for Health: A Public-Private Collaborative. The Personal Health Working Group Final Report. July 1, 2003. Available at: http://www.markle.org/downloadable_assets/final_phwg_report1.pdf
• Medem, Inc. First of Its Kind, Secure, Online Personal Health Record Available to Every American at No Cost. Press Release. May 9, 2005. Available at: http://biz.yahoo.com/prnews/050509/dcm027.html?.v=10
• National Programme for Information Technology (NPfIT), National Health Service, UK. HealthSpace. Information Sheet.
• National Health Information Infrastructure (NHII), U.S. Frequently Asked Questions. Available at: http://aspe.hhs.gov/sp/nhii/FAQ.html
• Ramsaroop P & Ball J. The "Bank of Health"—A Model for More Useful Patient Health Records. MD Computing. Vol. 17, No. 4, July/August 2000:45-48.
• Ross S & Lin C. The Effects of Promoting Patient Access to Medical Records: A Review. JAMIA. Vol. 10, No.2, Mar/Apr, 2003:129-138.
• Taylor H, Ed. Two in Five Adults Keep Personal or Family Health Records and Almost Everybody Thinks This is a Good Idea. HarrisInteractive® Health Care News. Vol. 4, No. 13, August 10, 2004.
• Wang M, Lau C, Matsen FA III & Kim Y. Personal Health Information Management System and its Application in Referral Management. Vol. 8, No. 3, September 2004:287-297. Available at: http://icsl.ee.washington.edu/projects/emedicine/phims-ieee-tbme2004.pdf. Also see project summary at: http://icsl.ee.washington.edu/~clau/
• Winkelman W, Leonard K & Rossos P. Patient-Perceived Usefulness of Online Electronic Medical Records: Employing Grounded theory in the Development of Information and Communication Technologies for Use by Patients Living with Chronic Illness. JAMIA. Vol. 12, 2005:306-314.
• Winkelman W & Leonard K. Overcoming Structural Constraints to Patient Utilization of Electronic Medical Records: A Critical Review and Proposal for an Evaluation Framework. JAMIA. Vol. 11, 2004:151-161.