When Congress instructed the Department of Health and Human Services to ensure that patients receive their test results as soon as they become available, it was done so with the best of intentions.
However, the implementation of that instruction has sparked a conflict between physicians and HHS, as well as patient advocates, and it has prompted the fundamental question of how to deliver bad news to patients. The discussion highlights how engrained practises are being disrupted and how the doctor-patient relationship is changing as a result of medicine’s digital transformation.
Doctors claim that because of patient portals, patients are already learning about potentially fatal diseases or other less serious but nevertheless puzzling test results before they have an opportunity to explain them. The American Medical Association is putting pressure on the government to change its regulations, and the physician trade association is gaining support from state legislators. However, according to patient advocates and HHS, patients should and can choose the timing of their tests.
Doctors claim to understand how their patients are feeling. According to AMA President Jack Resneck, patients “are tremendously angry and have experienced damages they are reporting from gaining quick access.” “We’re seeing a parent who learns that their child’s leukaemia has returned at nine o’clock on a Friday night when they can’t get through to anyone.”
The AMA and other medical advocacy organisations are pleading with HHS to permit them to hold off on disclosing test findings so they can explain them to patients. At least two state legislatures have been persuaded to take action on behalf of concerned doctors.
However, according to patient advocacy groups and HHS’ Office of the National Coordinator for Health IT, or ONC — which drafted the standards — such exceptions may cause more harm than good.
According to Grace Cordovano, a board-certified patient advocate, “That test result may be what someone needs in order to seek for a clinical trial, an emergency second opinion, for a Social Security disability claim, or to connect with vital community services.”
Elise Sweeney Anthony, executive director of policy at ONC, stated in a blog post on the organization’s website that she was better prepared for follow-up care after learning she had breast cancer before speaking with her doctor. She noted that having early access had given her the opportunity to research the particular malignancy and consult with a friend who had breast cancer in order to better prepare for her visit with the doctor.
A care team that embraced health information technology and collaborative decision-making, she noted, “easened my trip.” It was quite helpful that my care team supported my decision to obtain my lab findings in that manner.
the direction of Congress
In a 2016 bill known as the 21st Century Cures Act, Congress mandated that HHS prohibit healthcare organisations from storing patient data indefinitely.
Congress instructed HHS to stop clinicians, health IT developers, and networks and exchanges of medical information from obstructing the flow of medical information to consumers. Concerns that vendors and providers of electronic health records were making it more difficult to release patient health information in an effort to limit competition led Congress to take action.
The regulations aimed to encourage patient access and the sharing of health data.
When the coronavirus came in 2020, HHS first placed the rule on hold in 2019. The regulation entered into force in April 2021 with a more constrained scope that only applied to test results, then it was modified in October to cover the complete definition of electronic health information.
Just before, the American Medical Association, the American Hospital Association, the College of Healthcare Information Management Executives, and other organisations unsuccessfully requested a further delay, claiming that the vendors’ and providers’ deadlines weren’t in sync and that the technical systems of the providers weren’t yet ready.
Doctors are permitted to withhold patient information under HHS’s exception if doing so could endanger the patient.
The AMA, however, feels that the exception is too limited and requests that HHS make it clear that doctors may withhold information if doing so would result in “mental or emotional injury.”
When there is bad news to be delivered, Resneck said, “We’re simply asking for a little flexibility for a few hours or a few days to be able to deliver it by phone or in person and to be able to more personally communicate that awful news.” The occurrence of what we’re discussing is extremely rare—less than 1% of cases—
According to survey results it commissioned, over two thirds of patients want their doctor to explain “life-changing” outcomes to them.
Other medical groups are voicing their worries. While quick information availability for patients has advantages, according to Brian Outland, head of regulatory affairs at the American College of Physicians, which represents internists, the requirement is adding to doctors’ workloads and might be problematic for patients.
“Patients frequently become worried about the outcomes. Outland stated that it increases phone calls and “may add to the stress on the doctor,” and that it can also decrease patient trust in the healthcare system.
State legislators are becoming partners for the doctors.
A California bill supported by the California Medical Association was approved to provide physicians additional time to study data before making them public. Additionally, a law supported by the Kentucky Medical Association this spring enabled medical professionals to withhold test findings for up to three days if they thought doing so may cause emotional harm to patients.