Participation in Electronic Medical Records

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Patient Participation in Electronic Medical Records

Christopher C. Tsai, BA and Justin Starren, MD, PhD, College of Physicians and Surgeons, Columbia University, New York, NY

<< Electronic medical records (EMRs) hold great promise for improving the practice of medicine by facilitating communication between members of the health care team. The most profound influence of EMRs may lie in their ability to encourage patients' involvement in their own care. Potentially, patients could use EMRs to access their medical records online, learn about their health conditions, communicate with physicians, and even contribute to the chart itself. Certain hurdles to such access have yet to be overcome, such as ensuring privacy of personal medical data and determining the ways in which patients should be able to influence their charts; once these challenges are met, patients can look forward to a future of increased participation in and control over their own care. Prior innovations in telemedicine provide the foundation for interactive EMR projects. Telemedicine uses remote transmission of video, audio, and text data to provide subspecialist care or consultation to patients who might not otherwise have access to it. In teleradiology, for example, a neuroradiologist working remotely can diagnose brain pathology by looking at a digital image.[1] Telemedicine can also facilitate the practice of cardiology, orthopedics, dermatology, and psychiatry.[2] Telemedicine has been used to provide medical care to underserved rural communities, disaster areas, and military operations.[3] Interactive EMR builds on the telemedicine framework by making the medical chart, traditionally the province of the health care provider, a shared document that patients can access and update themselves. Numerous projects already allow patients to read specified portions of their charts online, manually enter data, and verify their medication dosages or track what doses they have taken. The Patient Clinical Information System (PATCIS) project provides patients with the ability to view laboratory results and text reports through a Web interface and to enter data such as vital signs.[4] The Patient Centered Access to Secure Systems Online (PCASSO) project focuses on developing a robust security architecture for direct patient access to an EMR.[5] The largest project combining telemedicine with patient access to an EMR is the Informatics for Diabetes Education And Telemedicine project (IDEATel).[6] Begun in February 2000, the IDEATel project is a 4-year, $28-million randomized clinical trial designed to maximize Medicare patients' control of their diabetes by providing them with a computerized link to their caregivers. Patients use a home telemedicine unit (HTU) that allows them to interact in multiple ways with their online charts. When patients measure blood pressure or fingerstick glucose with devices connected directly to the HTU, the results are automatically encrypted and transmitted securely over the Internet into the Columbia University Web-based Clinical Information System (WebCIS) and to customized case management software. Patients can also view and enter other data including diet, medication, and exercise information through the EMR. Patients and diabetes case managers can communicate through a secure clinical email system as well as via videoconferencing; case managers also receive alerts when patients' transmitted values exceed set thresholds. By allowing direct patient interaction with the EMR, case managers and physicians have much more accurate and up-to-date information for managing therapy. Patients learn to monitor their own condition by receiving immediate feedback after finger sticks and comparing blood glucose values over time. No new health care technique will be implemented unless it is demonstrated to be cost-effective, whether by improving health outcomes, or decreasing costs, or both.[7] Several studies have suggested that telemedicine is able to decrease costs while maintaining quality in the management of congestive heart failure, chronic obstructive pulmonary disease, cerebral vascular accident, cancer, diabetes, and anxiety.[8] Patient interaction with EMRs has the potential to reduce the frequency of clinical visits and improve health outcomes. Yet, one concern is that telemedicine interactions will replace clinical encounters, thus deteriorating the patient-physician relationship. It remains to be seen whether the face-to-face clinical encounters that supplement interactive EMR will be more productive and satisfying because of the long-term connection between physician and patient that can be provided by the EMR system. As telemedicine becomes incorporated into chronic disease management across the United States, patient-oriented EMRs may become a part of the standard of care of outpatient management in all medical specialties. Soon, third-year clerks may spend part of their ambulatory care rotation videoconferencing with patients and reviewing EMRs with them remotely. References

1. Allen A, Patterson JD. Annual survey: teleradiology service providers. Telemed Today. 1997;5:24-25. 2. Abt Associates' national survey of rural telemedicine. Reported in: Department of Commerce, Telemedicine Report to the Congress, p 16 ( January 13, 1997). 3. Garshnek MS, Burkle JR. Applications of telemedicine and telecommunications to disaster medicine: historical and future perspectives. J Am Med Inf Assoc. 1999;6:26-37. 4. Cimino J. Patient access to clinical information: the PatCIS project. Dec 31, 2000. National Library of Medicine Final Report, National Information Infrastructure Contract N01-LM-6-3542. 5. Baker DB, Masys DR. Assurance: the power behind PCASSO security. J Am Med Inf Assoc. 1999;6(fall symp suppl): 666-670. 6. Informatics for Diabetes Education and Telemedicine (IDEATel) home page. Available at: www.ideatel.com. Accessed January 31, 2001. 7. Masys DR. Telehealth: The need for evaluation. J Am Med Inf Assoc. 1997;4:69-70. 8. Johnston B, Wheeler L, Deuser J, Sousa K. Outcomes of the Kaiser Permanente tele-home health research project. Arch Fam Med. 2000;9:40-45. <IMG SRC="http://www.ama-assn.org/sci-pubs/msjama/images/top.gif" WIDTH="22" HEIGHT="27" BORDER="0" DATASIZE="999">
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BMJ 2003;327:692-693 (27 September)


Editorial
The role of risk communication in shared decision making
First let's get to choices

<snip>

Laws are leaning towards informed choice. For example, the supreme court of Canada in 1980 ruled that doctors have a legal obligation to disclose, unasked, whatever a reasonable person in that patient's particular position would want to know before making a decision. The ethical positions of medical guilds have more or less followed suit: "Duties of a doctor [are to] give patients information in a way they can understand; respect the rights of patients to be fully involved in decisions about their care."2 Informing patients and involving them in decisions therefore seem to be a doctor's duty.

It is within the "black box" of the medical encounter that patients most value information and the doctor's help in interpreting it. A consistent theme in studies is that patients want more information than they get. How often they mean risk information is less clear.

Risk communication is risky. We are predictably fallible and prone to biases in our judgments of risks and our use of information.3 There are relatively few medical problems for which good risk information is available. Uncertainty changes (as women taking hormone replacement therapy will have noticed recently). Risk evidence rarely includes psychosocial outcomes, although these are important to individual patients. The autonomous patient may not make a "better" medical decision, nor will better decisions guarantee better outcomes for the individual.

Informed and shared decision making has been called the crux of patient centred care4—an interesting choice of words. On a rock climb, another high risk activity, the crux is the hardest move, the one on which the whole enterprise depends. Shared decision making, of the informed sort, is difficult, and evidence shows that it rarely happens. For example, options and patients' understanding of information and role are rarely explored.5-7

This deficiency is often attributed to attitude: "Doctors... provide patients with too little information about the side effects of prescribed medicine... Shortfalls could be corrected by a change in attitudes, rather than a change in structures."8 But the time available in the consultation and the training of doctors (for example) are functions of structure.9

Formative medical training, when students are "professionalised," tends to be in acute care. They are taught to be responsible in settings where choices are few and patients' autonomy is limited. They are rewarded for being confident and getting the "correct" answer. This is unlikely to foster a predisposition to, or practice of, offering choices or enhancing patients' autonomy. They are taught interviewing and history taking but not much about giving patients information or risk communication. Most of our communications skills are habitual and learnt from role models—hard to change even when we wish. Are the most influential role models and opinion leaders also competent at shared decision making?

The things a doctor ought to be able to do to engage in shared decision making have been proposed.10 The story begins after the problem is identified. It includes explicit clarification of roles; information preferences; discussion of options with reference to the patient's characteristics and the evidence; response to the patient's ideas, concerns, and expectations; and partnership building. A statement of options seems to be a good starting point that may lead to the other elements.

Interventions that stimulate patient questions result in more involvement.11 Patients have difficulty asking questions—and they attribute this mostly to doctors' traits. They feel intimidated, are concerned about using the doctor's time, and fear that assertiveness will jeopardise rapport.12 A patient's question is a teachable moment. A testable hypothesis is that a doctor's conscientious and judicious search for and offering of choices will stimulate questions from the patient and lead to better information exchange and more involvement, perhaps even a role for risk communication.

What would happen if "We have some choices and they are..." was in the doctor's habitual script, and "What's the evidence for that, doctor?" in the patient's?

William Godolphin, professor of pathology

University of British Columbia, Vancouver, BC, Canada V6T 2B5 (wgod@interchange.ubc.ca)




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