Health Record Paradigm Shift: Consumer Health Informatics Status in the United States

Leslie Ann Fox, MA, RHIA


The momentum building toward the creation of the national health information infrastructure (NHII), and as part of that initiative, the widespread adoption of electronic health records (EHRs) in the US, signals the beginning of a renaissance in health information management (HIM). One of the most transformative concepts emerging from the development and implementation of EHRs is the creation of personal health records (PHRs), enabling consumers to better manage their own health information and be more informed participants in their own healthcare. As the US struggles with getting control over the cost of healthcare, employers, the insurance industry, and the government are looking seriously toward the potential of consumer-driven health plans based on health-savings accounts. In a consumer-driven healthcare plan, consumers have more responsibility for healthcare spending choices. Along with that responsibility, consumers will need and want ready access to and more control over their health information. For healthcare leaders who are creating a vision of an EHR, it is incumbent upon them to make sure that vision includes the creation of a PHR. A PHR can be created when the patient or his representative is given online access to portions of the EHR or to a subset of information derived from the EHR.  

Transforming all paper medical records to EHRs, launching the NHII, and creating a PHR for every consumer is no less of a paradigm shift for the healthcare industry than when the new world explorers proved the earth was round, not flat! The period in history from the 14 th to the 16 th century, known as the "Renaissance," followed those momentous discoveries and led to flourishing innovation and creativity in the sciences, the arts, literature, philosophy, and political thought. The new perception of their environment, a new world view, resulted in dramatic changes in the ways people lived their lives. The potential of a HIM renaissance to dramatically change healthcare, as we know it, is limited only by our imaginations. This paper will focus on a vision of a PHR and its potential for improving quality, safety, cost, and convenience of healthcare; the progress being made in implementing EHRs, which are integral to creating PHRs; and the needs of consumers that will propel the emergence of a new role for HIM professionals.

The Vision of Personal Health Records

How Consumers May Use a PHR to Improve Their Health Experience

Imagine that you have just moved to a new city and you are getting established with a new team of healthcare providers including a new internist, urologist, gastroenterologist, cardiologist, dermatologist, and dentist. As you visit each for the first time, the physician asks you for the details of your past medical history. You are old enough and have a complicated enough medical history that remembering the complete chronology of medical events in your life is difficult, thus, some or all of the physicians want to see copies of your medical records. You must start contacting the providers, sending authorizations for release of information, and following up to make sure records are sent to your new physicians before your next visit. It could be worse. You could have an emergency and need the information quickly, possibly for a life-and-death situation.

Now imagine a different scenario. When you visit each physician and are asked questions about your medical history, you go to a computer and access your entire medical history via secure Internet access. You may choose to give your physicians direct access to the information they need, or you may transfer the information you want them to have to their EHR systems via secure e-mail. Either way, you are in charge of your medical information.

Here is another scenario. Perhaps you have a chronic disease that needs to be monitored closely. You can access via the Internet and a secure password your physician's EHR to enter results of home monitoring. For example, you have hypertension and your doctor wants to adjust your medication based on trends in your blood pressure readings. The physician instructs you to use your home blood pressure machine daily and enter results into your PHR. Periodically you get an e-mail message from the physician with instructions to make changes in your medication or to make an appointment to come in for a visit. You also schedule your appointment online.

The examples above are just a few of the ways that a PHR could improve the quality and convenience of healthcare and enable a greater sense of personal responsibility for one's health in a consumer-driven healthcare system.

Attributes of a PHR

On July 1, 2003, The Markle Foundation's Connecting for Health: A Public-Private Collaborative published the Final Report of The Personal Health Working Group. In that report, they presented a vision of the PHR as " 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."1 Some of the attributes that the working group agreed to were:

  • The individual person controls the PHR and access to it.
  • The PHR captures a lifelong health record from all sources.
  • The PHR is private and secure.
  • The PHR is accessible from any place.
  • The PHR enables information to be exchanged among providers.
  • The PHR is transparent and contains an audit trail.2

In addition to the consumer benefiting from the PHR, others to whom a person gives access to the information will also benefit in their efforts to make the healthcare system safer and more efficient. Physicians, family members, insurance companies, public health agencies, and researchers are just some of the stakeholders who could benefit from a person giving them online access to part of his or her medical history.3

Results of a National Survey of Consumers and Consumer Focus Groups

Understanding the health information needs and desires of consumers is a logical and important first step in leading the way to a PHR. As part of the Personal Health Working Group's initiative, the Foundation for Accountability (FACCT) conducted a national survey of 1246 online households to learn their opinions about a PHR. The results are presented in the working group's final report. Some of the key findings included a high level of interest (70 percent) on the part of the surveyed group in using the features of a PHR and recognition on the part of the consumers as to the value of a PHR. Most respondents (91 percent) were concerned about privacy, but only about one-fourth indicated that they would not use the PHR at all because of privacy issues. It was interesting to note that people who suffered from chronic illness, or who were frequent users of the healthcare system, had fewer concerns about privacy than others in the survey.4

FACCT did an additional series of four focus groups with consumers in 2004 in Atlanta and Chicago to continue getting a better understanding of how consumers think about their current state of personal health information, how they perceive the benefits of keeping the information online, and to better understand the consumer demand for a more connected healthcare system, in which their information can move electronically to various providers as needed. The top three benefits identified in each of the four groups were: (1) gives better access to all my health information, (2) allows me to see if my information is complete and accurate, and (3) puts me in better control of my health and healthcare decisions. The stories from the groups also revealed a strong perception of a problem in communication among various parties of the healthcare system. The concern over privacy of identity and information came up but was mitigated in the discussions once the online banking analogy was raised.5 This is somewhat surprising given that the banking industry recently revealed that over 2 million Americans have suffered from identity theft due to illegal accessing of accounts through the Internet by hackers and other cyber-criminals. State-of-the art security must be a high priority in the design and implementation of a PHR.

While more research needs to be done to better understand the PHR interests and concerns of various market segments, the consumer market has in a sense already spoken with the successful emergence of online PHR-like tools sets from commercial e-health sites, drug stores, medical plans, and individual healthcare organizations. Such Web sites enable consumers to organize, manage, and track individual and family medical records; carry emergency medical cards that would allow an emergency healthcare worker to gain access to specifically marked emergency information when the consumer is unable to do so himself; to refill prescriptions online; and, to obtain medication reminders, which direct cell phone and pagers to remind a consumer each time he is scheduled to take a medication.6  In addition, physician-patient secure e-mail communications is increasing in popularity with consumers. All of these successful ventures into online personal health information management suggest that a significant portion of the US public would like to have a PHR with many of the attributes identified by the Connecting for Health Care Personal Health Working Group.

At the Fourth Annual eHealth Developers Summit, held November 5-7 in 2003 in San Diego, the widespread use of the Internet for seeking healthcare information was highlighted. It was reported "...consumer use of online health information is now the norm and many consumers look up health information for other people. An estimated 82 million consumers used online health information in 2003, but their 'zone of influence' reached more than 135 million people as many users searched on behalf of others." With so many consumers using the Internet for healthcare information, it is not a huge conceptual leap to realize that those consumers will want a way to access their own information online.

The development of the ultimate PHR is dependent on the implementation and widespread use of the EHR by healthcare providers and the enabling of interoperability through adoption of data standards. The report from the eHealth Developers Summit said that "Recent Web-based PHRs that interface with the individual's health plan and Web-based EMRs that provide shared provider-patient access are blurring the boundaries of these products, and additional hybrid EMR/EHR systems are likely in the near future."7 So one more challenge in the transformation from paper to EHRs will be to determine if and how the commercial PHR products available to consumers today may be integrated with provider-based EHR systems. The report also indicated, "attributes that should be considered in evaluating a PHR product include product/device portability, data collection methods, storage capacity, data security, and data transfer capabilities."8

Privacy Concerns

Along with the knowledge that consumers are interested in using PHRs and the belief that they will further leverage the patient safety and quality benefits of EHRs, concern about privacy is still an important issue to many consumers. Though these concerns are real and must be addressed, they seem unlikely to discourage large segments of the population from using PHRs. Don Detmer, Dennis Gillings Professor of Health Management, Cambridge University Health, Judge Institute of Management, University of Cambridge and Department of Health Evaluation Sciences, University of Virginia, USA, writes "While millions of Europeans now use a 'smart' card for personal authentication for health care and have unique personal identifiers as a matter of national policy, America is at risk of being unable to take this essential step." He further points out, "Growing experience with e-health and computer-based personal records around the nation and other nations shows that the great majority of patients are more interested in engaging with their clinicians, getting laboratory results, and scheduling clinic visits over the Internet today than foregoing care or such communications for the sake of potential risks to personal privacy."9 Detmer's remarks are consistent with the FACCT survey results indicating that people who use the healthcare system the most are less concerned about privacy issues.

From EHRs to PHRs: Progress in 2004

In April of 2004, President George W. Bush said that the "21st-century health care system is using a 19th-century paperwork system," and called for all US residents to have electronic records within 10 years.10 President Bush backed up his proclamation for EHRs by announcing the creation of a Health and Human Services (HHS) office to oversee the transition to electronic medical records in the next decade and to develop standards for electronic data sharing among healthcare providers. The office of the national health information technology coordinator will be part of the HHS secretary's office. The president also indicated that he planned to double the annual grants for EHR technology to $100 million in 2004. While $100 million is most certainly a welcome incentive, it should be noted that England is so convinced of the benefits of electronic health records that it is spending $17 billion to wire every hospital, clinic, and doctor's office. Every citizen of England is expected to have an EHR by 2005.11

The announcements from President Bush were welcome news to the many private and public organizations and governmental agencies that have been working hard the past few years to accelerate the movement toward adoption of EHRs in healthcare organizations. It was particularly gratifying because the president said "all US residents " would have electronic records , not all healthcare organizations. He framed the vision of electronic records with the consumer at the center rather than putting the healthcare organization at the center! At long last we have moved the public discourse about medical records toward a person-centered record. Implied in this vision are the rights and the responsibilities of all US residents to manage their personal health and to have the tools necessary to do so.

Despite all of the good news from the federal government, progress on key issues is still slow. Data standards to ensure interoperability and the daunting cost of EHRs and the NHII continue to be huge obstacles. While progress is being made on data standards, for example, the HL7 Electronic Health Record-System Functional Model Draft Standard for Trial Use has moved into the two-year trial use phase, progress on the funding issues is minimal. Numerous national legislative initiatives proposed in 2003 and directed at accelerating the adoption of EHRs by requiring the establishment of quality and data standards, and demonstration projects are not yet out of committee as of this writing (June 18, 2004).

Senator Edward Kennedy (D-MA) is the first lawmaker to formally propose directly linking payment incentives to providers' use of information technology. He is proposing that EHRs be implemented by 2011 and that HHS should set quality standards that would require both public and private payers to reward providers that reach such standards with higher payments than those who do not reach those standards. This proposal acknowledges that there are numerous stakeholders that will benefit from the implementation of the EHR in provider organizations besides just the providers. All stakeholders should share the burden of the costs of implementation. Private and public health plans, local and state regulatory agencies, the research community, the legal profession, and the public all benefit from the potential efficiencies and reduction of administrative costs that EHRs promise. All of these stakeholders should participate in the investment risks that the providers are largely shouldering alone.

Rep. Patrick Kennedy (D-RI) has perhaps the most ambitious mission of all the legislators. On June 17, 2004, he announced the creation of a bipartisan Congressional caucus to promote information technology among healthcare providers; The 21st Century Healthcare Caucus currently has 10 members but aims to recruit every member of Congress. Kennedy is also working with Newt Gingrich to promote IT as a way to improve healthcare and reduce costs. They are working on a bill to create a fully wired and integrated healthcare system by 2015. The bill, tentatively called the "The Quality, Efficiency, Standards, and Technology for Healthcare Transformation Act," would establish a system to evaluate pilot projects, as well as a pool of annual grants for states to implement and develop technology.12

A New Role for HIM Professionals: A Vision of the Consumer Health Information Advocate

As the industry goes through the travails of creating the NHII, EHRs, and PHRs, there is no question that the role of HIM professionals is changing dramatically. The emerging HIM role of consumer health information advocate, that is, providing HIM services to consumers directly is one that will build on a long history of advocacy for the privacy of patient information and the administration of HIM processes that insure the release of personal health information only to authorized individuals. HIM professionals have been the "keeper of the record" for most of the past century. While the paper goes away, the spirit of that role continues.

In the future, not only will HIM professionals continue to advocate for policies and procedures that maintain privacy and enable the patient to control who may access their personal health information, but HIM professionals will assume new responsibilities. A person-centered healthcare system, one in which consumers and healthcare providers forge a real partnership committed to optimal healthcare requires that people have both the tools and the knowledge to fully participate in their care. The PHR is the tool set, but consumers will have much to learn to achieve the full benefit of the PHR. They must learn how to use their newfound access to their personal health information to increase their participation in their own healthcare. The value of a PHR will be realized when patients can routinely access the best that the healthcare system can offer, make informed choices, and work with their healthcare providers to the prevent chronic diseases of western civilization and recover quickly from acute illnesses and injuries. HIM professionals must step up to assume this important education role.

At last year's AHIMA National Convention, "" was launched by AHIMA. This Web site targeted to consumers is part of the association's eHIM initiative. It is our profession's first consumer education offering on the PHR. But the real work will be done in the trenches by HIM professionals who take on the role of educating and serving people in their communities. Just as lawyers are a resource to consumers to help manage their legal documents, and accountants to manage their financial records, professional consumer health information advocates should become part of the personal advisory team that most people develop over a lifetime. These valuable advocates will teach people how to access and protect their information, how to use the technology that is developed for PHRs, and how to make the best use of a PHR to develop a life-long partnership with the healthcare system that supports safe, high quality, cost effective personal healthcare.


In 2003 and 2004, private, public, and governmental organizations collaborated as never before to tackle the long-standing obstacles to EHRs and a NHII. The frustration of healthcare providers and consumers with inconsistent, incomplete, and inefficient access to medical histories, resulting in high costs to patient safety, quality of care, and utilization of resources, is driving a committed healthcare industry to work collaboratively toward removing the obstacles preventing adoption of data and communication standards to pave the way for implementing EHRs. Further assisted by legislative initiatives to overcome financial obstacles, the vision of a NHII is beginning to come into focus. With the future of EHRs looking more secure and imminent, the ultimate dream of PHRs used by consumers to more actively participate in and manage their health becomes imaginable and achievable. HIM professionals must play a substantial role in advancing this next generation of medical records and in developing practices to help providers and consumers realize the full potential of a powerful new tool set.


  1. Markle Foundation, Connecting for Health: A Public-Private Collaborative. The Personal Health Working Group, Final Report, July 1, 2003, page 3.
  2. Ibid. Page 54.
  3. Ibid. Page 5.
  4. Ibid. Pages 5 and 6.
  5. Research conducted by the Foundation for Accountability. "Excerpts from consumer focus groups regarding electronic personal health records." Portland, Oregon. June 17, 2004. (
  6. WebMD: Health Manager. (accessed June 18,2004)
  7. Eng TR, Beauchamp N. eHealth: Striving for Critical Mass. Seattle, Washington: eHealth Institute, May 2004, page 23
  8. Ibid, page 6.
  9. Detmer, Don E. "Building the national health information infrastructure for personal health, health care services, public health and research" BMC Medical Informatics and Decision Making. ( accessed May 21, 2004.
  10. www., "Bush Announces HHS Office to Promote IT, Develop Standards."
  11. Editorial. "Medical paper-pushers resist opportunity to improve care." USA Today. May 13, 2004, page A. 21.
  12. iHealthbeat. June 18, 2004 .

Source: 2004 IFHRO Congress & AHIMA Convention Proceedings, October 2004