Reporting test results directly to patients: Is there anything to lose?

The report by van Walraven and colleagues¹ on patient follow-up after an incidental finding of abdominal aortic aneuyrsm (AAA)—published today in Open Medicine—highlights an important conundrum in patient care: Who is responsible for monitoring and acting on test results when care is shared among different providers? Although it may seem convenient to place that accountability with the ordering physician or the patient’s family doctor, there are many points at which this approach can lead to ineffective and inadequate management. We suggest that one way to solve this problem might be to communicate test results directly to patients.

The study authors found that almost one-third of patients with an AAA discovered incidentally on diagnostic imaging received no follow-up imaging, and that, even when monitoring did occur, it was not performed with the frequency recommended in well-known clinical practice guidelines. Patient comorbidity appeared not to be associated with incomplete monitoring; in fact, the only findings related to lack of adequate follow-up were advancing age and larger size of the aneurysm at detection. These counter-intuitive results are unlikely to help us target patients at a higher risk of being missed.

These worrying findings illustrate a serious problem in the continuity of patient care: not all patients with a potentially life-threatening condition receive adequate follow-up. That this occurs with respect to AAAs is important enough, but it is also likely that similar results would be found in the context of other, equally serious, test findings. How many solitary pulmonary nodules, abnormal iron studies, or other results are not followed up appropriately? As much as this study alerts us to a potentially widespread problem, it provides little guidance toward a solution.

Who is responsible for incidental but important findings from diagnostic tests performed by physicians other than the family physician? Is it the family physician, the ordering physician, or both?

Family physicians frequently have patients who require treatment in the emergency department or hospital. Such patients often return to primary care with no documentation of the investigations conducted, let alone of any abnormalities detected. In addition, most family physicians do not have access to hospital records, whether electronic or paper-based. When results are passed on to the family physician, he or she may be unclear about the hospitalist’s role in follow-up. On their end, hospital physicians might assume that the family physician copied on the report is following up abnormal results, especially those unrelated to the patient’s hospital stay or reason for referral. However, there is no feedback loop to let the hospitalist know that the correct information was conveyed, received and acted upon.

If we rely on the family doctor to follow up on abnormal test results, we would require a foolproof way to ensure that all patients actually have such a provider, that the provider is accurately identified at the testing site, that the provider receives a copy of the report, and that the provider acts appropriately on the results. Our current health system cannot guarantee that these processes will occur reliably.^2,3 Moreover, our current processes are inefficient: physicians report spending over an hour a day following up on and communicating results^4,5 and that there often delays in doing so in a timely manner.⁴

On the other hand, placing the responsibility on the ordering physician might make patients better off. In this scenario, the ordering physician would be required to receive the results and to take responsibility for acting on them. This would include identifying incidental findings unrelated to the patient’s presenting problem and arranging appropriate follow-up. Challenges to this solution include the fact that hospital physicians often work shifts, and might be on clinical service for only a few weeks per year, and thus might not be available when results are reported, leaving them to be interpreted and managed by a covering colleague. Also, if the results are originally seen in the emergency department or hospital ward, there might not be an appropriate venue for the ordering physician to see the patient. Finally, an ordering physician in, say, an emergency department, is unlikely to have the kind of clinical relationship with the patient that is necessary for ongoing care. These issues leave several places for error to occur and likely contribute to the kind of inadequate follow-up reported by van Walraven and colleagues.

One possible means of improving the likelihood that test results are followed up appropriately is simply to provide those results to the patient directly. This would then transfer some responsibility for ensuring timely follow-up to the patient. This could be a desirable shift, given the increasing engagement of patients in health-care decision-making. Because patients are the most affected by the results of any test, they will presumably be the least likely to forget that a test was done or that unexplained findings need to be monitored.

Patients themselves report that they feel they should be informed of all test results, regardless of whether further management is required, and are satisfied with receiving results by mail, telephone, or at an office visit.⁶ In a study of patients undergoing diagnostic imaging, the majority expressed a desire to hear the results, whether normal or otherwise, directly from the radiologist—even if those results suggested cancer.⁷ In the same study, 40% of respondents indicated a preference for hearing the results from their primary care physician, but 94% indicated that they should be entitled to ask for, and receive, results from radiologist if they wanted to.⁷ Women undergoing screening mammography also reported that they would rather receive the results directly from the radiologist rather than waiting to see the ordering physician,⁸ although these findings conflict with those of earlier studies.⁹

What are the risks of this approach? Although patients express a desire to know their test results, it is possible that some may be distressed by the findings, particularly if they are unable to interpret their implications because of cognitive issues or the inherent complexity of health care information. Second, knowing a test result and being able to respond appropriately to it are two different things: presenting a patient with results doesn’t mean that he or she will be able to access the health care resources required to act on the information, such as booking a follow-up abdominal ultrasound. Many patients in Canada have no family physician,² and our current health care structure doesn’t enable patients to navigate the referral system on their own. Another risk is the possible perception that providing test results directly to patients transfers responsibility from the health care provider to the patient. This would not be appropriate, for example, for patients who do not have the capacity to make health care decisions, and would add to the complexity of ensuring that a surrogate decision-maker is made aware of the results. Whatever the circumstances, some physicians and patients may view this solution as an erosion of the physician­–patient relationship.

However, many of these issues become less important in a responsive health care environment in which all patients have a primary care provider to help them navigate the system. Indeed, it may be paternalistic not to inform patients of their results directly, especially because, as van Walraven and colleagues show, physicians often fail to act on important results. We would argue that our suggestion adjusts the physician–patient relationship in a positive way by shifting the balance of power from the professional toward the patient. However, having patients receive results doesn’t resolve the question of who is responsible for them, and our current system may not have the necessary ingredients to support patients in bearing this responsibility themselves.

In conclusion, the study by van Walraven and colleagues demonstrates that responses to important test results are often inadequate. This problem is structural, and is related to our complex health system. Although the increasing use of electronic health records might help reduce the risk of incomplete follow-up, this solution does not address a fundamental gap in patient engagement. Although enabling patients to be informed directly of their results may entail some risks, these are not fully understood. Health systems need to innovate boldly and assess these concerns from the patient’s perspective in order to ensure timely, reliable and proactive follow-up.

Biographies

Claire Kendall is Deputy Editor, Open Medicine; Assistant Professor, Department of Family Medicine, University of Ottawa; and Clinician Investigator, C.T. Lamont Primary Health Care Research Centre, Ottawa, Ontario.

Alan J. Forster is Scientific Director, Clinical Quality and Performance Management, The Ottawa Hospital; Associate Professor, Department of Medicine, University of Ottawa; and Senior Scientist, Ottawa Hospital Research Institute, Ottawa, Ontario.