Case Objectives

• Understand the complementary abilities of an electronic health record and a personal health record in promoting a safe care system.
• Understand the value of patient and family involvement throughout the care process, enabled by this technology.
• Learn about the impact of changing Internet access across population groups, and new entrants into the personal health record space.

Case & Commentary: Part 1

A 70-year-old man with type II diabetes and chronic kidney disease was admitted to the hospital after being found unresponsive at home with a blood glucose level of 23. Two days previously, he had been seen at another emergency department (ED) due to symptomatic hypoglycemia. At that time, he was treated and released with instructions to stop his antidiabetic medications. On this admission, he was resuscitated with IV dextrose and recovered quickly without neurologic complications. The patient did not speak English. After he became alert, the medical team questioned him via an interpreter and learned that the patient did not understand that he was supposed to check his blood sugars at home and did not know the symptoms of hypoglycemia.

The challenge of health literacy immediately presents itself at this point in the case. For a patient in this demographic, poor health literacy is a significant risk factor for his future mortality.(1) Although there are limitations in what individual clinicians can do to solve the overarching problem, it is vital that doctors, nurses, and pharmacists work to mitigate their individual patients' risk. In fact, the case of a patient who does not speak English and is elderly provides an excellent illustration of how health information technology, implemented with a patient-centered focus, can help.

Case & Commentary: Part 2

On further history, the medical team learned that the patient had also received multiple samples of oral hypoglycemic (i.e., antidiabetic) medications from his primary care physician and was taking them indiscriminately. He was discharged home in good condition and was strictly instructed not to take any antidiabetic medications.

The case report does not mention whether the patient's primary care physician received communication about the care and postdischarge plan.

Even in 2008, most practices in the United States continue to use paper-based discharge communication systems. Such a system would require that a member of the patient's primary care team manually update the patient's primary care record after an ED visit or a hospitalization. This is a significant point of failure. The likelihood of failure here is further exacerbated by the variability of the discharge process across different health care institutions—primary care physicians may encounter a unique discharge form and process for every hospital in their community. Errors are likely to be reduced when hospitals use electronic medical record (EMR) systems, because the patient's primary care team can receive a legible printed medication list. However, even when there is an EMR-generated medication list, the documentation generated by the hospital is probably unique to its own vendor's system, since vendors (and most provider organizations) have not standardized the printed output coming from their systems. Such lack of standardization also impedes efforts to move information in electronic form from hospital to primary care practice, a point I will explore further below.

Case & Commentary: Part 3

Eight days later, the patient was readmitted after again being found unresponsive, this time with a blood sugar of 11. In the interim, he had seen his primary physician, who had restarted a sulfonylurea (a common type of antidiabetic drug) despite the patient's relatively advanced chronic kidney disease. The patient recovered after a 3-day hospitalization.

The Promise of the Electronic Health Record

An electronic health record (EHR) has been defined as "an electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be created, managed, and consulted by authorized clinicians and staff across more than one health care organization."(2) This definition distinguishes the EHR from a simple EMR, since the latter need not span multiple health systems. Using this definition, I don't believe that a true EHR exists in the United States at this time. However, patients who receive care in self-contained integrated delivery systems may have an experience that closely approximates that which a true EHR would offer.

There are a number of ways in which information technology could have been used to avoid this patient's multiple ED visits and two preventable hospitalizations. For one, even an EMR localized to one organization might have prevented this patient's hospital admission, by providing point-of-care decision support to the patient's primary care physician regarding the use of oral hypoglycemics in the presence of chronic kidney disease. Moreover, an EMR-generated after-visit summary, given to the patient after an ED visit or primary care encounter, would provide additional safety. Given that 40%–80% of medical information provided by health care practitioners is forgotten immediately and almost half of the information that is remembered is incorrect, an after-visit summary might support better adherence to a care plan.(3) It is now possible for health systems to purchase acute-care instructions in multiple languages that can be integrated into an after-visit summary, accompanied by customized instructions from the discharge team.

Even better, the presence of a true EHR would have markedly facilitated the transition of care from the ED to the outpatient setting. In the most advanced integrated systems in use today, medication reconciliation activity can be performed electronically in the ED and is reflected instantly in the patient's outpatient record. The result is that an updated record of the patient's care plan is available to the primary care team from the moment he is discharged from the ED. This record can be used to facilitate safe care whether the patient calls the primary care office on the phone or comes in for a visit. In the presented case, this information might have been available to the primary care physician prior to the second preventable admission. With access to the information about the change in medication regimen and associated discharge information, the physician might well have modified the patient's care plan, particularly in light of his chronic kidney disease and his health literacy issues.

Moving the Locus of Control Toward Patient, Family, and Community

Even as we discuss the holy grail of an interoperable EHR, it is worth noting that the description above is of a system designed largely to support a practitioner-centric, rather than a patient-centric, health system. These are inadequate solutions because they present information to, and about, patients at discrete points in time, typically during the acute phase of illness, and allow limited to no interaction with the patient's personal health information when it is needed most. Such systems also do not encourage practitioner behavior to support collaboration with patients. I believe that changing the locus of control from provider and health care organizations to patients themselves will prove to be the most powerful impact of health information technology.

Personal health records, which give patients online access to their health information, are health records viewable, managed, and shared by patients. Personal health records that include interactive messaging offer patients continuous engagement with their health and health care providers, and protection against errors. Features that support patient involvement include the ability for patients to review after-visit instructions, perform searches against information in their medical record, confirm medication regimens, and ask questions of their health care teams when it is convenient for them.(4)

Personal health records will also change practitioner behavior whether or not individual patients or their families access the information. For example, in the case of prescriptions, even if a physician does not tell the patient the name of a medication being prescribed (which happens up to 26% of the time according to one study [5]), a computer-generated summary will prompt questions, which will in turn change prescribing behavior. In the hospital, a family member who has access to the patient's medication administration record may become aware of a missed antibiotic dose. The family member might then call the nurse or doctor, prompting a bedside discussion of the patient's regimen instead of the more common, non–patient-centered conference room or nursing station rounds.(6) Patients with online access may develop enhanced expectations for timely and accurate delivery of information, which will stimulate reexamination of information-constrained care processes. It will no longer be acceptable to tell a patient, "If it's normal, you won't hear anything from us"—every intervention will generate information for patients about the result, even one that is expected, along with an opportunity to ask further questions.

Although legitimate concerns have been raised about lack of computer and Internet access for medically underserved populations, such access has been expanding rapidly. Presently, 73% of the American population reports using the Internet or e-mail. For adults older than 65, the figure is 35%. For Spanish-dominant Hispanic adults, the figure is 32%.(7) While Spanish-dominant Latino adults get health information from the Internet only 17% of the time, they get health information from family or friends 56% of the time, and 55% of English-speaking Hispanic adults have Internet access.(8) Obviously, continued promotion of widespread Internet access will be increasingly important as more health information and communication become electronic.

In addition, there are innovative uses of patient-centered health information technology that could help patients such as the one described in this case. One such system, used by Queens Health Network in New York City, utilizes smartcards that allow patients to exchange personal health information with local care providers and EDs.(9) In Sonoma County, California, a system called MiVIA connects migrant and farm workers to the health system through a personal health record and identification system supported by health promotores (health promoters who specifically work with the migrant/farm community).(10) In both examples, the patient manages privacy and security, either through the use of a physical device or via permissions embedded in a web-based system.

The presented case does not indicate if the patient's support system (family, friends, community) was assessed for their ability to be informed about and assist in management of this patient's care. Family involvement, and the ability to support it through the use of personal health technology, is a key aspect of preventing errors. Many health care systems recognize this and provide proxy access for authorized family members, such as parents of children or adult children of aging parents. For a hospitalized patient, a family's online access to the hospital course could make a significant difference in terms of identifying potential errors and supporting the postdischarge care plan.

Toward an Interoperable Personal Health Network

The latest efforts of companies like Microsoft and Google are furthering these innovative efforts to promote patients' access to their personal health information. Both companies are regularly interacting with multiple stakeholders in the health care arena (patients, providers, employers, health plans, and community organizations) to learn about health care while leveraging their expertise in serving people online. Both are keeping abreast of the latest connectivity standards in health care while regularly using standards used in other industries.(11) The Certification Commission for Health Information Technology will begin certifying personal health records in 2009, with a focus on privacy, security, and interoperability.(12) It is likely that every patient or health care organization will soon be able to choose a personal health record service or product with confidence—some offered by their own health care provider or system, and others offered by outside vendors. Data clearly show that they want this access, whether they are insured or uninsured (13), and this demand, coupled with growing national experience with personal health records, will stimulate further innovation.

Toward a World of Technology-Facilitated Patient and Family Involvement

Within the care environment, an EHR can provide guidance at critical times and transmit a record of decisions made between care providers. This is a first layer of protection. The more potent layer is the involvement of people who know the patient best—patients themselves and those who support them. A system where the information can only be provided to patients and families at discrete times, often while the patient is in distress or alone, is unsettling to many who provide health care, and potentially devastating to those who receive it. When health information technology is implemented with the patient in mind, the cumulative impact of everyone on the team doing their best—including the patient, their family, and their community—is much greater than what can be achieved by an inpatient team or a primary care team working in isolation.

Finally, it is important to state that participation should extend to the design and implementation of systems. Developing effective information technology systems will require the involvement of not only patient advisors, but allied health leaders, nursing leaders, and physician leaders. The care experience extends far beyond the patient–physician encounter; all who are involved in supporting the care should participate in designing its future.

Take-Home Points

• An EHR facilitates error prevention at the point of care, as a first layer of protection.
• Personal health records protect patients through greater involvement in the care process and should be implemented as a part of any health information technology project, inpatient or outpatient.
• Robust personal health record systems are now available and will continue to flourish with the advent of a certification process and the increasing involvement of established technology vendors.

Ted Eytan, MD, MS, MPH

Faculty Disclosure: Dr. Eytan has declared that neither he, nor any immediate member of his family, has a financial arrangement or other relationship with the manufacturers of any commercial products discussed in this continuing medical education activity. In addition, his commentary does not include information regarding investigational or off-label use of pharmaceutical products or medical devices.

References

1. Baker DW, Wolf MS, Feinglass J, et al. Health literacy and mortality among elderly persons. Arch Intern Med. 2007;167:1503-1509. [go to PubMed]

2. Defining Key Health Information Technology Terms. Chicago, IL: National Alliance for Health Information Technology; 2008. Available at: http://www.nahit.org/images/pdfs/HITTermsFinalReport_051508.pdf

3. Kessels RP. Patients' memory for medical information. J R Soc Med. 2003;96:219-222. [go to PubMed]

4. Ralston JD, Carrell D, Reid R, et al. Patient web services integrated with a shared medical record: patient use and satisfaction. J Am Med Inform Assoc. 2007;14:798-806. [go to PubMed]

5. Tarn DM, Heritage J, Paterniti DA, et al. Physician communication when prescribing new medications. Arch Intern Med. 2006;166:1855-1862. [go to PubMed]

6. Brown T. Design thinking. Harv Bus Rev. 2008;86:84-92, 141. [go to PubMed]

7. Fox S. Degrees of access. E-patients.net Web site. February 21, 2008. Available at: http://www.e-patients.net/archives/2008/02/degrees_of_acce.html

8. Livingston G, Minushkin S, Cohn D. Hispanics and Health Care in the United States: Access, Information and Knowledge. Washington, DC: Pew Hispanic Center; 2008. Available at: http://pewhispanic.org/reports/report.php?ReportID=91

9. Eytan T. A different kind of patient access to HIT at Queens Health Network. Ted Eytan Web site. February 26, 2008. Available at: http://www.tedeytan.com/2008/02/26/716

10. Vineyard Worker Services, St. Joseph Health System, Sonoma County Health and Community Development Resource Center. MiVIA™ Online Personal Health Record System Web site. Available at: https://www.mivia.org/

11. Kibbe D. Google Health beta—What's really new and different? Health 2.0 Google Blog Web site. May 23, 2008. Available at: http://www.health2blog.com/2008/05/google-health-b.html

12. Personal Health Record PHR Advisory Task Force. Certification Commission for Healthcare Information Technology Web site. Available at: http://www.cchit.org/about/organization/commission/advisory/phr/

13. Copeland W Jr, Keckley PH; for Deloitte Center for Health Solutions. 2008 Survey of Health Care Consumers: Executive Summary. Washington, DC: Deloitte Development LLC; 2008. Available at: http://www.deloitte.com/