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Patients who receive test results online before their physician has had a chance to review them should have immediate access to resources to help them adjust to bad news, an expert suggested.

"We need to do more to wrap patients in support and information tools and technology when that result is scary, when that result is catastrophic," Grace Cordovano, PhD, a patient advocate in West Caldwell, New Jersey, said Monday on a webinar sponsored by the Office of the National Coordinator for Health Information Technology (ONC).

"What can we do from a digital health standpoint? Is there a chatbot? Are there educational webinars? Can we better connect patients to peer health support, to an advocate, to a nurse navigator, to a social worker? I'd love to see more to help patients -- who do get an unfortunate result or a scary result -- really wrap them in more resources," she added.

The law allowing patients to receive test results without having to go through a clinician first became more prominent with the 2016 passage of the 21st Century Cures Act, which included a section on preventing the blocking of health information, including electronic health records (EHR). In May 2020, the ONC issued a on information blocking and other parts of the Cures Act; the rule supported patients having access to their test results as soon as they were available.

The sharing of clinician notes and test results "has been required by HIPAA [the Health Insurance Portability and Accountability Act] for more than 20 years," Deven McGraw, JD, LLM, MPH, former deputy director for health information privacy at HHS during the Obama administration, said on the webinar. "What's changed is just how quickly patients get this data."

Benefits of Access

Elise Sweeney Anthony, JD, executive director for policy at the ONC, said she had personally benefitted from that quicker access. "As a breast cancer survivor, I chose to receive my findings of whether I had breast cancer or not through my portal, and that was a decision that was right for me," she said.

"Throughout my cancer journey -- multiple surgeries and multiple biopsies -- I have continued to receive my results this way," Anthony continued. "It has helped me to manage my care while also having a job and being a mother. It has also helped my husband to be part of my care team and to help me with some of the questions that I wanted to know [answers to] before I went into my next visit with my doctor."

"The day that I found that I had breast cancer through that portal surely changed my life," Sweeney added. "I definitely cried and I was in disbelief; it was not really the way I was planning to go into my 40th year. But after waiting for the biopsy for some time, I now knew what I was facing. And I was able to look at the results on my time, with my husband by my side." It also gave her an opportunity to call a friend who had had breast cancer, and who helped Sweeney get ready for her next appointment.

Sweeney's preferences are similar to the vast majority of patients, according to S. Trent Rosenbloom, MD, professor of biomedical informatics at Vanderbilt University in Nashville, Tennessee. Rosenbloom co-authored a in which researchers surveyed more than 8,000 patients at four academic medical centers in the U.S. They found that 96% of patients preferred receiving immediately released test results online, even if their healthcare practitioner had not yet reviewed the result.

"That [percentage] didn't vary whether the result they received in the portal was normal," Rosenbloom said. "That result didn't vary whether the patient looking at the result became more worried -- [even if] their breast cancer biopsy result came back abnormal, they still want to have this kind of access to their results, even if they may worry a little bit more."

Importance of Support Systems

Asked why he thought patients would prefer to receive a result immediately even if it was an abnormal one, Rosenbloom told 乌鸦传媒 that "what we hear from those patients we talk to in formal interviews ... is this: bad news is bad news no matter how it is delivered, and being able to access results any way, the patient has power. Patients accessing bad results tend to have support systems in place -- pre-counseling and family/friends/communities to help them. They also often choose not to look if it is something they are particularly worried about."

Despite the new rule, "there are still many physicians that are saying, 'Gosh, these information blocking rules are terrible. Gosh, this is causing so much distress to my patients. I need to be the one to tell them about it,'" said Cordovano. "I'll use the example of billing. I see patients that get bills in the amounts of thousands, tens of thousands, hundreds of thousands of dollars. They open those bills, unsupported ... But we don't stop selling sending bills because they might cause harm and I can assure you, the bills are causing harm to patients. I've watched people contemplate divorce, want to flee the country, contemplate bankruptcy, forgo treatment."

And there is a lot of misunderstanding about what the new rule does, Rosenbloom said. Many physicians don't know that patients can turn off notifications of test results; conversely, some doctors think they're not allowed to discuss the results with patients and that patients are now being forced to look online instead.

Misunderstandings Common

McGraw agreed that misunderstandings still occur. She described her own recent experience with a dermatologist who biopsied her for a possible a basal cell carcinoma. "I was told by my dermatologist that if my results were negative, the skin biopsy would be in my portal within 2 weeks; if they were positive, they would not be put in my portal, and then I would need to call -- but I shouldn't call the office until 2 weeks after the biopsy procedure had occurred."

"That required me to spend 2 weeks waiting and then calling them on the 2-week day to say, 'I haven't had any communications either way,'" said McGraw, who is now lead for data stewardship and data sharing at Invitae, a biotechnology research firm in San Francisco. Although a basal cell carcinoma isn't life-threatening, it was a good example of how "there is just so much lack of knowledge in the ambulatory provider community in particular, that I think it creates a big challenge for patients because for many of them, their expectations are rising and yet we still have these outdated procedures being followed that are creating obstacles to patient care."

At Vanderbilt, more than 2 years into the immediate release of test results onto patients' portals, "we're just not hearing all the things we were worried about," Rosenbloom said. "Mostly, this is just a major cultural change ... I still occasionally get emails blasted to me about the woman who got her positive breast cancer biopsy on a Friday. Most of the time it's the healthcare professionals, not the patients, who are upset about that."

The focus on health equity for receiving test results needs to be increased, said Sean Bina, vice president for access and patient experience at Epic, an EHR company. That includes "finding new, broader ways to get access" to the results, he said.

"Whether I'm initiating that access through a text, an email, on an old flip phone, or on a smartphone, there [should be] ways that patients can get in and just simply be able to access" their results, and patients need multilingual accessibility so language doesn't become a barrier, Bina added.

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