Personal Health Record (PHR) Systems: An Evolving Challenge to EHR Systems

Shepherdstown 22 July 2007Over the next 10 years, healthcare organizations large and small will complete their transition to the use of comprehensive health information systems that include electronic health record (EHR) and personal health record (PHR) systems. During this time period, provider organizations will acquire and deploy EHR systems to better meet the clinical information needs of the healthcare providers in caring for their patients. At the same time, many ordinary people, in addition to those with chronic and acute conditions that warrant close monitoring and support, will adopt the use of PHR systems.

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The personal health record (PHR) is different from an EHR. The PHR is an electronic, lifelong record of health information that is maintained by individual citizens. These individuals own and manage the information in the PHR, which comes from both their healthcare providers and the individuals themselves. In this article, we focus on the growth in use of the personal health record (PHR) and will try and describe the current state of affairs with regards to the development and implementation of PHR systems.

PHR Systems - A Vision & Timeline for the Future

From a patient's perspective the evolution of the PHR as we move into the future may go something like this:
  • 2007 Crawling = a PHR on a personal computer, linked to application like MS Word and Excel, kept on a portable hard drive or smart card, containing most of a person's medical information. Less than 2% of the population using PHRs.
  • 2010 Walking = my PHR embedded in my mobile phone, PDA, or iPod, with full-time connection to the Internet, capable of scanning for needed health and medical information programmed into the support system. Less than 10% of the population using PHRs.
  • 2015 Jogging = the PHR has evolved into the complete medical record interfaced to EHRs used by their healthcare provider organizations. It may include a digital nurse that continually seeks "health and medical information I want" and processes real-time biometric information from implanted biosensors. More than 20% of the population using PHRs.
  • 2020 and Beyond ... Running Fast = eHealth Advisor Live (eHAL), a secure interactive Internet-connected service, combined with a portable virtual doctor with artificial intelligence, that provides full access to medical history and all necessary real-time biometric information being collected via intelligent clothing and implanted biosensors. The virtual doctor has arrived for people with the specific medical needs that require such services. Well over 50% of the population using PHRs.

Relative to both EHRs and PHRs, there are a number of "wild card" events that could accelerate or decelerate adoption. If a major healthcare organization had a breach in security and thousands of medical histories got posted publicly on the Web, this would reinforce public concerns about privacy and security of eHealth and decelerate the process. However, another event like Hurricane Katrina or a major bio-terrorism event could accelerate the process. There are numerous other factors that can slow or speed up EHR and PHR adoption: complexity, lack of interoperability, high cost, ease of use, and rate of change in reengineering medical business practices.

PHR Definitions

  • The personal health record (PHR) is an electronic, universally available, lifelong resource of health information maintained and owned by an individual.
  • The personal health record (PHR) is different from an electronic health record (EHR) system maintained by a healthcare provider organization. The PHR is maintained by the individual patient. These individuals own and manage the information in the PHR, which comes from both multiple healthcare providers and the individuals themselves.

Current Status of Healthcare

Meeting the healthcare needs of people in an effective and efficient manner is becoming an ever-more challenging proposition as costs rise, reimbursement goes down, quality accountability goes up, and demands for new treatments increase. Professionals, politicians, and patients are realizing that the current healthcare system, despite all its strengths, is broken and must be transformed.

Simply put, the current healthcare system must evolve from the doctor-centered production system of today to a more holistic, integrated person-centered system of the future. We must better understand that each of us is the primary healthcare provider for ourselves. In many ways, people are becoming their own "ConsumerMD", supported by advanced information systems, technologies, and processes that enable self-care. The rise of Personal Health Record (PHR) systems will play a key role in this impending change.

Background on PHR Systems

According to Wikipedia, the earliest English-language article indexed by PubMed that mentions the term "Personal Health Record" is dated June 1978.

The National Committee on Vital & Health Statistics (NCVHS) issued the "Strategy for Building the National Health Information Infrastructure (NHII)" in November 2001. In this report it mentions the personal health dimension supporting individuals in managing their own wellness and healthcare decision-making. It specifically mentions a personal health record (PHR) that is maintained and controlled by the individual or family, plus non-clinical information such as self-care trackers and directories of healthcare and public health service providers. See http://aspe.hhs.gov/sp/NHII/Documents/NHIIReport2001/default.htm

In early 2000, the number of articles and recorded instances of PHR implementations also began to increase significantly as PHR systems began to proliferate and be implemented by a growing number of healthcare provider organizations.

In January 2005, American Health Information Management Association (AHIMA) formed an electronic health information management workgroup to examine the role of the PHR in relation to the electronic health record (EHR). Based on research of current industry activities, AHIMA and the American Medical Informatics Association (AMIA) now advocate empowering individuals to manage their healthcare through the use of a personal health record (PHR).

In February 2006 NCVHS released a comprehensive report and recommendations on "Personal Health Records and Personal Health Record Systems" that bears reading. See http://www.ncvhs.hhs.gov/0602nhiirpt.pdf

PHR Principles & Functionality

The basic principles and functionality that follow come from the recent joint report by AHIMA and AMIA on Personal Health Records (PHR). See http://www.amia.org/inside/releases/2006/ahima-amiaphrstatement.pdf

Basic Principles

  • Every person is ultimately responsible for making decisions about his or her health.
  • Every person should have access to his or her complete health information. Ideally it should be consolidated in a comprehensive record.
  • Information in the PHR should be understandable to the individual.
  • Information in the PHR should be accurate, reliable, and complete.
  • Integration of PHRs with EHRs of providers allows data and secure communication to be shared between a consumer and his or her health care team.
  • Every person should have control over how their PHR information is accessed, used and disclosed. All secondary uses of PHR data must be disclosed to the consumer, with an option to opt-out, except as required by law.
  • PHR products should be certified by CCHIT to comply with data standards, include a minimum data set, identify each data's source, and meet security criteria consistent with HIPAA.
  • The operator of a PHR system must be accountable to the individual for unauthorized use or disclosure of personal health information. The consumers should be notified immediately of security breeches leading to disclosure of personal health information.
  • A PHR may be separate from and does not normally replace the legal medical record of any provider.
  • Privacy protection of PHR data should follow the data. PHR data must not be used in any discriminatory practices.

PHR Information & Functionality

Broader than a medical record, the PHR should contain any information relevant to an individual's health. For example, a PHR should contain the following information:

  • Personal identification, including name and birth date
  • People to contact in case of emergency
  • Names, addresses, and phone numbers of your physicians, dentists, and specialists
  • Health insurance information
  • Living wills, advance directives, or medical power of attorney
  • Organ donor authorization
  • A list and dates of significant illnesses and surgical procedures
  • Current medications and dosages
  • Immunizations and their dates
  • Allergies or sensitivities to drugs or materials, such as latex
  • Important events, dates, and hereditary conditions in your family history
  • Results from recent physical examinations
  • Opinions and notes of clinical specialists
  • Important tests results; eye and dental records
  • Correspondence between an individual and his or her healthcare provider
  • Current educational materials, or appropriate web links, relating to one's health

In addition to medical information such as test results and treatments, a PHR should probably include diet and exercise logs, in addition to a list of over-the-counter (OTC) medications. PHR systems should provide a range of other services that meet the needs of patients such as:

  • Allow scheduling of clinical appointments online, as needed
  • Provide wireless access to public and private health and medical knowledge bases
  • Allow authorized access to your PHR anywhere, especially in an emergency
  • Allow you to buy needed health and medical related products online
  • Monitor and record nutrition intake, exercise, and other health related activities
  • eRx services that allow a patient to request Rx refills and manage prescribed or OTC products
  • Order or obtain selected services from your preferred physician or healthcare system
  • Have your PHR updated real-time from wearable or implanted biometric sensors
  • Access an array of other services tailored to your medical condition

Personal Health Systems (PHS) in Europe

The "Conference on Personal Health Systems - PHS 2007" took place in Brussels in February 2007 and was organized by the European Commission. The vision for PHS to take healthcare out of the hospital, bring it to the home and embed it into people's lives was clearly articulated at the conference. As in the U.S., they are still in the early stages of deployment in Europe. The following are two key points articulated at the conference:
  • Successful deployment of Personal Health Systems (PHS) presupposes the existence of favorable policy and political support. To obtain this support, there is a need to continue to collect large scale clinical evidence which demonstrates how PHR systems contribute to improved patient well-being, patient safety, quality of care, and affordability.
  • Empowerment of patients and their families through use of health IT systems is critical to the future of healthcare. Again, while there are many isolated success stories, there is a need to collect more evidence and clearly document the cost/benefits. Further collaboration between the U.S. and Europe could accelerate progress.

Examples of Available PHR Systems in the U.S.

The following are brief descriptions of just some of the many collaborative projects, activities, and organizations involving the development and implementation of personal health record (PHR) systems. We have focused heavily on those projects that involve open source solutions, but also include Commercial-Off-The-Shelf (COTS) solutions.

AHIMA and myPHR

The American Health Information Management Association (AHIMA) is a national nonprofit professional association, founded in 1928, dedicated to the effective management of personal health information needed to deliver quality health care to the public. It has put together a Web site with a set of procedures and forms you can use to construct your own personal health record. See information on myPHR at http://www.myphr.com/.

My HealtheVet

My HealtheVet (MHV) is the gateway to veteran health benefits and services. It has been developed and deployed by the U.S. Department of Veterans Affairs (VA) and provides access to trusted health information, links to federal and VA benefits and resources, the Personal Health Journal, and now online VA prescription refill. In the future, MHV registrants will be able to view appointments, co-pay balances, key portions of their VA medical records online, and much more. It has been deployed at all VA medical centers across the country, and hundreds of thousands of veterans are now using this PHR system. See http://www.myhealth.va.gov/.

My HealtheVet - A Personal Health Record (PHR) for Veterans

A veteran's health records may be scattered across many different VA and non-VA healthcare provider offices and facilities. A Personal Health Record (PHR) will allow each veteran to keep their own complete, up-to-date, and easily accessible health record which will allow them to be more involved and in control of their own health. However, a trustworthy online PHR can be hard to find. The Department of Veteran Affairs (VA) has answered the call for a trusted PHR system for veterans by creating My HealtheVet accessible at www.myhealth.va.gov.

My HealtheVet employs internet technology to provide veterans, their family, and health care providers with standardized, accurate, and timely health information and services they can trust. My HealtheVet provides veterans a secure, user-friendly web-based environment for creating and maintaining their own complete Personal Health Record.

The MyHealtheVet Personal Health Record (PHR) includes information that your doctor may not collect, such as your personal exercise routines or dietary habits. Veterans can record and securely store self-entered health information such as emergency contacts, healthcare providers, health insurance, treatment locations, family and military health history, along with any allergies, immunizations, and medical events in a personal health journal. These health journals may give your physician a better view of your overall health and well being. My HealtheVet also includes health e-logs for recording blood sugar, blood pressure, cholesterol, heart rate, pain, body temperature and weight, and blood-oxygen level readings taken between doctor visits.

In addition, My HealtheVet offers trusted health information and education materials provided by Veterans Health Administration (VHA) and selected external partners. In addition, information concerning VA benefits, services, programs, and health news are also available via the MyHealtheVet web site.

My HealtheVet links veteran's self-entered information stored in My HealtheVet with the VA electronic health record (EHR) stored in the VA Computerized Patient Record System (CPRS). Veterans who receive care at VA facilities will soon be able to extract key portions of their VA electronic health records and store them in their My HealtheVet Personal Health Record (PHR).

My HealtheVet is a revolutionary enhancement that will fundamentally change the way veterans manage their health. Through the use of a complete Personal Health Record you will be able to better connect with your physicians and caregivers, and become more actively involved in managing your health. Visit My HealtheVet at www.myhealth.va.gov.

Eastern Maine Healthcare and MyOnlineHealth

MyOnlineHealth is a secure Internet service designed to give residents, patients, and consumers a way to better manage their health care. Eastern Maine Healthcare and its member hospitals began providing this service in 2002, free to consumers. See http://www.myonlinehealth.com/.

iHealth Record

The iHealth Record was released in May 2005 by Medem. It was a joint venture of the American Medical Association (AMA) and other healthcare organizations. Key features include:

  • No cost to patients. The service is funded by physician and hospital groups who license the service for their patients.
  • Online consultations for patients paid for by health plans.
  • It has the capability to include e-mail capabilities between doctors and their patients.
  • It includes current medical conditions, medications, past surgeries and allergies, and end-of-life directives.
  • Health information is securely stored on the Medem network and cannot be sold or provided to any third parties without a patient's permission.
  • Additional resources include education programs, automated reminders regarding medications, and other services.
  • Patients decide which physicians will have access to view the record, and for what period of time that access is granted.
Visit http://www.ihealthrecord.org/.

Consumers have many choices when selecting a PHR system that meets their needs. Their healthcare providers, employers, or insurers may offer them a PHR at little or no cost. They can also select from a growing number of PHR vendors who offer either a software application or online service. Links to some other examples of Open Source and COTS Personal Health Record (PHR) systems include:

Consumers should take the time to understand the advantages and disadvantages of the various types of PHR providers. I recommend reading "12 Questions Consumers Should Ask When Choosing a PHR", by AHIMA.

Selected Benefits, Issues, and Other Concerns

With regards to technology, this is no longer the key link in the chain. There are still issues like interoperability, user-friendliness, reliability and dependability, which need to be addressed. However, other factors like organizational change, business process reengineering, economical viability, reimbursement, legal framework, liability, patient privacy, and system security are of more concern and need to be fully addressed. See http://www.hoise.com/vmw/07/articles/vmw/LV-VM-07-07-28.html

With regards to cost/benefits, according to a recent AAFP Report published in May 2006 (www.aafp.org/fpm/20060500/57anin.html), personal health records (PHR) offer a number of potential benefits to patients, their physicians and the health care system. These include:

  • Empowerment of patients
  • Improved patient-provider relationships
  • Increased patient safety
  • Improved quality of care
  • More efficient delivery of care
  • Better safeguards on health information privacy
  • Bigger cost savings

While PHR systems offer many advantages, they also raise at least two concerns:

  • Privacy - Most Americans are concerned about the privacy of their health information; however, when developed in the right way, electronic PHRs offer security features that can provide better protection than paper-based record systems.
  • Accuracy - Involving patients not only in viewing and interpreting but also entering their own data raises the issue of data accuracy. Here again, proper development of the PHR can reduce this concern and actually improve data accuracy.

On a final note, according to a recent article published in JAMIA (See www.jamia.org/cgi/content/abstract/13/2/121) when PHRs are integrated with electronic health record (EHR) systems of healthcare provider organizations, they provide greater benefits to consumers than would stand-alone PHR systems.

Conclusion

During the next 10-15 years, the consumer-directed movement of the early 21st century will evolve and fully recognize that in healthcare people are not simply patients to be defined and treated according to their disease or condition. The healthcare industry will realize that healing and supporting optimum health depends on a person-centered philosophy. A philosophy that recognizes that people, not physicians, are their own true primary healthcare providers will emerge. There will also be a recognition that the whole person must be treated: mind, body, and spirit. The rise of Personal Health Record (PHR) systems will play a key role in this impending transformation.

As of 2007, the development and implementation of personal health record (PHR) systems are still in the early "crawling" stage. However, by 2020, we predict that more than 50% of the people in the United States will be using PHRs in one form or another. These secure web-based systems will provide people with online educational materials, interactive tools for physician communication and wellness, and storage banks for personal health data that includes genomic information and clinical images.

Recommended Next Steps

  • Establish an Interdisciplinary Workgroup to identify functional requirements and/or potential uses of PHR systems by physicians and patients.
  • Educate and Engage Customers: Identify groups of patients/customers with selected long term medical conditions and develop an educational program and materials about the benefits of PHR systems.
  • Identify Partners to collaborate on the development of PHRs (e.g., research, development, pilot projects).
  • Conduct a Feasibility Study and cost-benefit analysis for PHR initiatives.
  • Establish a Pilot Project to acquire, develop, and test a PHR system for your healthcare organization.
  • Profile Clinical and Business Process Changes and the paradigm shift that takes place when patients assume control of their medical records through use of electronic PHR systems.

Get moving! Most healthcare organizations are currently focused on electronic health record (EHR) systems and health information exchange (HIE) solutions. However, real transformation of our healthcare system will take place when personal health record (PHR) systems are widely deployed and used across the country.

Selected References

You can delve deeper into the subject of PHR systems and other emerging health IT solutions in the book entitled "Medical Informatics 2020", published in January 2007 by Jones & Bartlett. See http://www.jbpub.com/catalog/0763739251. Also, consider visiting the Virtual Center for Collaboration, Open Solutions, and Innovation (COSI) in Healthcare at www.shepherd.edu/surc/cosi.

Authors:

Peter J. Groen is on the faculty of the Computer & Information Science Department at Shepherd University in West Virginia and is one of the founders of the Shepherd University Research Corporation - see www.shepherd.edu/surc

Douglas Goldstein is an "eFuturist", author, guest speaker, and CEO of Medical Alliances, Inc. See www.medicalalliance.com

Ms. Jaime Nasuti is a Management Analyst at the U.S. Department of Veterans Affairs (VA).


Peter Groen, Douglas Goldstein, Jaime Nasuti

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