I read with great interest the recent study by Miles et al., which is the first to identify that more than half of patients with access to their radiology reports through a web-based portal viewed them . In the age of information technology and the decline of paternalistic medicine, an increase in patient access to their medical information has arguably only been a matter of time. Indeed, in recent months the large tertiary health center where I am based has followed suit and for the first time also begun to provide online access for patients to view their radiology reports. The one caveat is the inclusion of a 3-day compulsory delay between the date of the scan and the start of online access, to allow for an attending physician to review the radiologist’s report for significant findings before the patient does. The open release of radiologic information to patients, and the finding of Miles et al. that the majority of patients who are given such access use it, raises a number of ethical questions.
Until now, radiologists have largely been able to avoid the responsibility of conveying information adapted for a layperson, with the ordering physician instead acting as a gatekeeper between the patient and their imaging results. Accordingly, the problem with allowing uncontrolled patient access to this information lays in the fact that radiology reports are traditionally written by physicians for physicians trained in “speaking radiology.” In recognition of this, Johnson et al. found that 62.9% of patients reported that they would use Internet resources to try to understand their radiology reports if they were given access . Further, the American Medical Association currently recommends that patient education materials are written at no higher than 6th-grade school level .
Even radiology reports of relative insignificance are filled with an abundance of jargon that allow them to be as medically informative as possible. “Hyperintensity,” “attenuation,” “reduced white matter” – these are but a few examples of commonly found words in radiology reports that can be insignificant and part of a spectrum of normal variation with, for example, age, unless they fit a particular clinical context. However, when these words are typed into a World Wide Web browser, an abundance of pathologies that can show these findings appear and may cause undue worry and anxiety to the nonexpert. Such information can also be notoriously unreliable. Concerned patients may then take steps to contact an already heavily time-pressured radiologist directly for clarification.
In 2009, a founding member of the Society for Participatory Medicine said “Give us our damn data” . With the health system increasingly obliging, the question is, what, if any, are the radiologist’s responsibilities now in how the information is conveyed? Ethically speaking, in the spirit of Hippocrates, does a responsibility for doing no harm extend to a duty to convey the information in a way that patients are able to understand, and minimize the possibility for needless anxiety and confusion? And if that cannot be done because it is impractical or a wasteful use of time to, for example, write a separate report for the physician and the patient, then has the right decision been made to release the information? Or, with patient autonomy in mind, is it a decision to make at all?
These are all difficult questions to answer. Currently, Miles et al. present the first study of its kind in the literature on real-world access to radiology reports for patients. As the study touches upon, it will be important for future studies to extend on this research to not only evaluate patterns of access to reports but to retrospectively assess downstream consequences of such access on patients, radiology departments, and the radiologist–patient relationship alike. Meanwhile, some feasible options are (1) for radiologists to be acutely aware of a need to be explicit about both the significance and insignificance of findings, (2) emphasized good communication between the ordering physician and the patient regarding the meaning of the report, and (3) inclusion of reliable educational hyperlinks with reports .
References
1. Miles R.C., Hippe D.S., Elmore J.G., et. al.: Patient access to online radiology reports: frequency and sociodemographic characteristics associated with use. Acad Radiol 2016;
2. Johnson A.J., Easterling D., Nelson R., et. al.: Access to radiologic reports via a patient portal: clinical simulations to investigate patient preferences. J Am Coll Radiol 2012; 9: pp. 256-263.
3. Weiss B.D.: Health literacy: a manual for clinicians.2003.American Medical Association, American Medical FoundationChicago
4. e-patient.net : What part of “Give us our damn data” do you not understand?.2009. Available at: http://e-patients.net/archives/2009/12/what-part-of-give-us-our-damn-data-do-you-not-understand.html Accessed October 11, 2016