Clinical and Health Affairs
The Future of Personal Health Records: A Summary of a Roundtable Discussion
By Gary Oftedahl, M.D., and Melissa Marshall
Abstract
In 2009, the Institute for Clinical Systems Improvement held a roundtable on personal health records (PHRs). Participants shared their thoughts about which features and functions are desired in a PHR, areas that need further exploration, and ways PHRs could make health care more efficient and effective. This article summarizes those discussions.
In late 2009, the Institute for Clinical Systems Improvement held a roundtable on personal health records (PHRs). Thirty-three participants including physicians, consumers, electronic health record (EHR) vendors, employers, and representatives from health systems and health plans, state agencies, and public purchasers took part. The goal was to help determine how PHRs might enable the development of health care homes and other emerging models of care delivery. This article provides a summary of what was discussed.
Current PHR Models
A review of the literature on PHRs and feedback from roundtable participants showed that experts consistently describe three types of PHRs—tethered, standalone, and interconnected.
Tethered PHRs are maintained by the health care provider or health plan but are accessible to the patient. Often, they allow the patient to access some information in the EHR, such as key lab results, or to schedule appointments. An example of this is MyChart, which is offered through Epic Systems Corporation and used by a number of health care systems in Minnesota. Standalone PHRs are created by the individual using web-based tools or software. Individuals enter and maintain information about themselves or their family members. Examples of standalone PHRs are Microsoft’s HealthVault and Google Health. Interconnected PHRs are those that conform to nationally recognized interoperability standards and allow access to patient information bidirectionally across multiple venues. Although interconnected PHRs are considered most desirable, they are in their infancy, and there is little, if any, evidence that they will soon be available. There are a number of advantages and disadvantages associated with each type of PHR (Table).
Participants agreed that the following characteristics or functionalities were desired in the next generation of PHRs.
■ Consumer Control and Portability
Consumers should be in control of their (or their family’s) PHR, and, ideally, it should stay with them for a long time. Participants differed on what “consumer control” meant, however. Some thought it meant that consumers should be able to see any type of stored information as a part of their PHR and make notes on or append this information. Others felt that consumers should determine what is and is not included in the record, be able to “see” when their records are accessed by others, and be asked permission any time their information is used or sent somewhere.
Portability refers to the PHR’s ability to “follow” individuals who switch employers, health plans, or providers. Participants agreed that portability is a desired characteristic but one that is difficult to achieve under current business models. PHRs now are designed to be used primarily by patients of a particular health care organization, enrollees of a health plan, or employees at a business.
■ Simplicity and Ease of Use
Participants felt that simplicity and ease of use are critical if PHRs are to gain widespread acceptance. They noted that the full benefit of a PHR will only be realized when individuals use it to communicate with their providers, obtain test results that lead to a diagnosis, make behavioral changes that will improve their health, connect with peer support groups, or get real-time feedback on acute or chronic health problems.
■ Security and Privacy
Participants agreed that any information contained in the PHR and that any communications that take place through it should be private and secure. Unfortunately, current privacy laws including HIPAA don’t necessarily apply to PHRs. PHRs also raise new legal concerns related to patient identification, authentication of those who use information, data integrity, and security standards. According to the American Health Information Management Association, “privacy and confidentiality remain the top issues to solve before PHRs can proliferate.”
Some experts contend that the description of the “owner” of the PHR is significant. Developing a PHR for individual use is less complex than designing one for family use. If the PHR is intended solely for the individual, it would not need a mechanism for collating information from multiple relatives, which would be required in a PHR designed for use by more than on family member. Designing a PHR that allows multiple parties to access a patient’s health information would be even more complex. These considerations are not trivial for organizations developing PHRs.
■ Provider Workflow and Reimbursement
Many experts believe that the PHR could greatly increase the efficiency and effectiveness of health care, as it can assist providers in triaging patients, making more accurate diagnoses, understanding drug and treatment side effects more quickly, and communicating with their patients and colleagues. But those communications and other interactions that take place through the PHR must be integrated into the provider’s workflow without becoming burdensome. In addition, providers must be compensated for the work they do through the PHR.
The roundtable discussion reflected a circular argument often heard today—that if payers pay for electronic communications and e-visits, providers will start providing these services more consistently, or when providers design a way to incorporate PHR information and electronic work into their delivery of care, payers will develop reimbursement systems that reflect this change in the way they work.
■ Connectivity and Interoperability
Connectivity and interoperability were deemed crucial features of PHRs. But a principal challenge to creating a fully interoperable PHR is the lack of national standards.
■ Health Improvement
Participants agreed that a PHR would help individuals and families improve their health and better manage chronic diseases by doing the following: Improving communication with their providers, Helping providers identify the most appropriate course of action for a particular patient, Enabling real-time feedback for individuals and providers about how well a particular intervention did or did not work, and Increasing the efficiency and effectiveness of the health care system so providers could access the patient’s complete history and see what care the patient already has received, and thus possibly reduce duplicate testing.
Areas for Further Exploration
Roundtable participants also discussed several issues that proved to be especially controversial. Agreement could not be reached in a few areas. The Impact on Clinical Quality and Effectiveness Participants said a connected, integrated PHR would be needed to truly affect the quality and effectiveness of health care. Understandably, there is no uniform agreement on what research, outcomes, and quality benefits should be expected from increased use of PHRs.
The group envisioned that an interconnected PHR that is integrated into the provider’s workflow would permit patients to report symptoms, side effects, and outcomes, and that providers could gather large amounts of data from these reports. By using algorithms and decision support systems, they could then respond quickly to a patient’s needs. If individuals consented to sharing their data, information regarding the side effects of drugs or treatments, comparative effectiveness, population outcomes, and infectious disease outbreaks could be gathered and analyzed in nearly real-time using PHRs.
However, concerns were raised about the accuracy of the information that might be incorporated into the PHR. Data in medical and billing records are often fraught with errors; in addition, allowing individuals to edit parts of their PHRs was not seen as a way to improve the accuracy of the records.
■ The Impact on Care Delivery Design
There was general agreement that the PHR could have a significant impact on the design of the care delivery system. Those who favor a patient-centered health care system view the PHR as essential. The consumer control they envision represents a significant structural and cultural change in the delivery of health care for both patients and providers. However, participants pointed out that some individuals are unable to assume control of their health care. In addition, they pointed out that if providers use information systems, decision support, and algorithms to triage care and manage larger patient populations, patients may not feel they are getting the individualized care they deserve.
It was discussed that providers will need to deal with issues of autonomy and control and will need to adapt their systems and design their work to accommodate patients armed with a PHR.
■ The Business Model
Personal health records will not succeed if their costs outweigh their benefits. Most participants were confident the business case for PHRs could be made and that the appeal of the PHR was its potential to facilitate a drastic redesign of health care delivery and reduce health care costs while improving quality.
Yet it was acknowledged that there is little in the literature regarding the costs and benefits of PHRs. Detmer and colleagues have noted that “a variety of factors have made the integrated PHR business case difficult to ascertain.” This is largely because the costs and benefits vary by stakeholder and accrue differently to each group. According to Detmer, many of the benefits of a PHR would accrue to individuals and families, but there is no evidence that they are willing to pay directly for a PHR.1
Future Opportunities
Comments from the roundtable participants and the literature show that many envision greater use of PHRs in the future, despite the previously mentioned challenges. All participants acknowledged that the opportunities for and potential benefits of PHRs are great. They also expressed belief that health care one day will include some type of PHR. For this to happen, they said industry must do the following:
- Address privacy, security, control, ownership, discoverability, and liability concerns. New laws, regulations, and standards will be needed to do this.
- Ensure PHR information is accurate, complete, and reliable. The PHR raises concerns about the individual’s role in editing, withholding, or changing the attributions of health information.
- Allow for physician/provider autonomy and delivery-system redesign. Both an advantage and a disadvantage of the PHR is its potential to significantly disrupt the way care is delivered and the nature of the patient-provider relationship.
- Reimburse providers for e-visits. Physicians and other health care providers will be much more willing to incorporate PHRs into their work if they are compensated for doing so. Payers should lead the way in promoting PHR usage by reimbursing for electronic communication and consultation with patients.
- Close the digital divide. Health care currently struggles with disparities related to race, economics, age, region, and education. Careful attention must be paid so that disparities in health care are not made more pronounced as we implement PHRs.
- Create a viable business model. Any innovation that adds net costs to the system will not survive in today’s health care economy. Incentives may be needed to encourage innovation in the development and use of PHRs.
Participants concluded that experts and interested stakeholders must continue to feel a sense of urgency about the need for, provide strategies for, and eliminate barriers to adoption of PHRs. MM
Gary Oftedahl is the chief knowledge officer and Melissa Marshall is the clinical systems improvement facilitator for the Institute for Clinical Systems Improvement in Bloomington.
Reference
1. Detmer D, Bloomrosen M, Raymond B, and Tang P. Integrated personal health records: transformative tools for consumer-centric care. BMC Medical Informatics and Decision Making 2008;8:45doi:10.1186/1472-6947-8-45. Available at: http://www.biomedcentral.com/1472-6947/8/45. Accessed June 3, 2010.