if your test results were bad, would you want to know before seeing your doctor?
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among those who viewed a result before talking to a doctor, nearly half said they felt less worried after getting an early look at the findings. getty
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a new study has found that patients overwhelmingly support immediate access to their test results even if this means receiving bad news before they have a chance to talk to their doctor.
the research, published in the journal jama network open, comes almost a year after the u.s. implemented new federal rules that make it mandatory for health-care providers to make nearly all test results and clinical notes immediately available to patients. although research has suggested this practice empowers patients to become more active participants their own care, there were concerns that access to this information without a doctor present could do more harm than good.
“online patient portals have emerged as important tools for increasing patient engagement,” said catherine m. desroches, co-senior author of the study and executive director of opennotes, the international movement based at beth israel deaconess medical center (bidmc) in boston. “they enable patients to access information, participate in medical decision-making and to communicate with clinicians. prior studies performed by opennotes investigators established immediate release of clinical notes as a recommended best practice.
“however, releasing test results to patients immediately, often before a clinician can provide counselling and context, was yet to be studied widely and remains controversial.”
releasing results before clinician can counsel has been controversial
to gain a better of sense of how patients feel, desroches, who is also an associate professor at harvard medical school, helped distribute surveys to more than 43,000 patients and care partners from april 2021 to april 2022. these 29-question surveys, which were sent to major medical centres across the u.s., covered a range of topics, including test result information, result review behaviour and, most importantly, the impact of reviewing test results on one’s health and well-being.
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of the 8,130 participants who returned a survey to researchers, 80 per cent had been able to view at least one of their test results over the past month, with 57 per cent receiving normal findings. the vast majority of these patients (90 per cent) indicated they would like to continue to receive their results through patient portals. almost all (96 per cent) wanted to receive them immediately, even if their doctor or provider had not had a chance to review them first.
immediate access did not appear to have a negative effect on patients as evidenced by the low number of respondents (eight per cent) who said they became more worried after viewing their results. among those who viewed a result before talking to a doctor, nearly half said they felt less worried after getting an early look at the findings.
among those who received results that were not normal, 84 per cent said this information lessened or did not change their level of worry. however, when compared to the group who received normal results, this group was more likely to report being worried or much more worried (17 vs. 5 per cent). although this indicates some patients will be more worried upon receiving their test results, 95 per cent of those who received abnormal results were still in favour of being granted immediate access to them.
“respondents overwhelmingly preferred to receive test results through the patient portal, even if it meant viewing results prior to discussing them with a health-care professional,” said liz salmi, co-author of the study and communications and patient initiatives director of opennotes at bidmc. “as health-care systems continue to navigate this new era of health information transparency, balancing patients’ expectation of immediate access to their information with the need to manage increased worry is important.
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“additional research is necessary to better understand the nuance of worry from receiving abnormal test results, especially as it relates to revealing information about a newly diagnosed condition such as huntington’s disease or cancer.”
dave yasvinski is a writer with healthing.ca
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