New Study Shows Patients Prefer Immediate Access to Test Results and have Unmet Information Needs
Jordan Everson | March 20, 2023
A recent study of 8,000 patients that accessed their test results via an online patient portal found that more than 95% wanted to continue to immediately receive test results through their portal. That percentage stayed at 95% when focused on patients with non-normal results.
These findings come amid concerns that the immediate release of test results could lead to patient distress when patients access test results before their physicians could contact them and help to interpret those results.
Although the HIPAA Privacy Rule has explicitly enabled individuals’ right of access to their protected health information in the “designated record set” for many years, it also gives health care providers and other covered entities up to thirty days to provide access before a delay could violate the Privacy Rule. The 21st Century Cures Act made information sharing the norm, and any unreasonable, unnecessary interference with an individual’s right of access to their own records could implicate HHS information blocking regulations. In practice, this means that since the ONC information blocking regulations became applicable to health care providers on April 5, 2021, a patient may be able to access test results in parallel to those results’ availability to the ordering clinician.
ONC spoke with the lead authors of the study: Bryan Steitz, instructor in the Department of Biomedical Informatics at Vanderbilt University Medical Center; Robert Turer, assistant professor in the Department of Emergency Medicine at the University of Texas Southwestern Medical Center; and Catherine DesRoches, Associate Professor of Medicine at Harvard Medical School and the executive director of the Open Notes Initiative. Highlights of the conversation are below and have been edited for clarity. The full recording is available at the end of the post.
Could you provide an overview of your study and the key findings? What did patients say about test results that were immediately released to them?
Bryan Steitz: (0:50) Our study provides, I think, the largest multi-site study to date about patient portal users’ perception and attitudes related to viewing their immediately released test results through the patient portal since the implementation of the 21st Century Cures Act. We surveyed patients who received their results between April 2021 and April 2022 across four academic medical centers, and we received just over 8,000 responses.
A couple of key findings: First and overall, patients and care partners were really overwhelmingly supportive and preferred to have immediate access to results [95.7% of patients overall would like to continue to receive immediately released results], and this was even if it meant reviewing their results before their providers. This held true even among individuals who received abnormal results [95.3% of patients who received abnormal test results would like to continue to receive immediately released results]. Then even though there was this preference to receiving immediately released results, receiving abnormal results was associated with nearly twice the likelihood of worry compared to respondents who received normal results.
We also found an association between pre-counseling– so whether the clinician discussed the reason for the test and the implications prior to or at the time of ordering—and reduced patient worry. But this association was only significant at two sites, and when we combined the model across all sites, it was not significant.
You report overall about 8% of patients were more worried after seeing a test result. But something I thought was interesting is that more patients said they were less worried after seeing test results—normal or abnormal—than before seeing those results. Overall, how should we think about [that]?
Robert Turer: (3:23) We have a pretty large sample size that suggests in aggregate that information is empowering to patients and that it can relieve worry. That’s sort of the big picture story of what you’re describing here, even in the setting of abnormal test results. However, it is probably a little bit too early to get too deep into psychological harms or benefits to patients from the immediate release of these results.
Do you have a sense of how often patients understand the implications of test results? And how could that be improved?
Steitz: (6:40) Again, the study didn’t specifically measure patient understanding around the result. But we did see that nearly 57% of respondents in our survey went looking for additional information after they reviewed their results, and the majority of those individuals looked at the internet, and about a quarter asked another healthcare provider.
And then in some of our previously published research we found that messaging nearly doubled in the six hours following reviewing results compared to that pre-Cures time. Both of these findings suggest that there are unmet information needs, especially around reviewing and understanding the implication of results.
I wonder, with this notion of unmet information needs in mind, is there something you think could be explored or recommended to health systems or health IT developers to do to facilitate the transition to immediate release and maximize the benefit and minimize the potential negative impacts of that transition?
Steitz (8:31): I think there’s opportunity to allowing patients to have greater flexibility managing the release and notification preferences. And I think while some patients may like to receive these results as soon as possible and have time to review and do their own research, there’s also likely a cohort of patients who would rather wait and get this information from their provider, where they’re able to ask questions or get the provider’s thoughts and then go do their research.
DesRoches (9:50): There does seem to be a trend toward pushing out information to patients through the portal at the time the test is ordered saying, “You may see the results before I do. But I will call you.” They sort of try to set the expectations for patients that “Yep, you might see this, but I’m still going to get in touch with you. So if you have questions, don’t worry about it. We are going to get a chance to talk.” So kind of setting that up in advance to manage expectations does seem to be something I’m hearing from lots of different places.
I’m aware of a few other studies on this topic and patient views on receiving test results through the portal. I want to ask how your results compare to those other studies, and do you have a sense for why there might be differences?
DesRoches (12:15): One study from right before the implementation of the [Cures] rule showed that, not surprisingly, physicians and patients are pretty far apart on their views of getting test results through their portal, with patients being overwhelmingly positive about it and clinicians feeling, “This is not a great idea, my patients are going to be very worried and upset by what they’re seeing.”
Another study showed that patients had differing preferences for what they wanted to receive through the portal, and it really looks like those preferences are affected by how serious they perceive the test to be.
Our results are different, and I think it is primarily because many of those prior studies were really based on hypothetical questions: “What if you knew this?” or “What if you had a test for this?” And we think differently about things when we think about them in a hypothetical way versus real-world experiences, which is what we were testing. And when real world experiences happen often people are like, “Oh, actually that was okay. I was worried but it was okay, and I still got to talk to the doctor and it worked out fine.”
So, I think both patients and clinicians can go to that kind of worst-case scenario right away and that makes it more likely for them to have different views about things. But most of us aren’t dealing with the worst-case scenario every day and it turns out that patients really felt like “Okay, this was actually okay,” and I think that’s the main difference. (15:35)
I wanted to get a sense of how you see the problem that is being addressed by the immediate release of results?
Turer: (16:54) At the end of the day, open results is about empowering patients to use clinical data—which is their data—to make informed decisions about their lives and their healthcare. The reality is that healthcare is complex and there are plenty of situations where balls get dropped within daily care practices. And I think a lot of these situations are opportunities where immediate release of results and access to portals could allow patients to raise concerns earlier.
It also allows for easier sharing. Nowadays a lot of patients are starting to become more nimble with the use of patient portals and I can see the results from another institution because the patient has access and is empowered to share that information. So, it enhances interoperability and it lets me personally take better care of folks in a collaborative way, and it avoids waste by not having to repeat studies that they had one, two, or three weeks ago. So, in addition to an empowerment thing, it is also a patient safety thing. That’s the core of the problem we’re trying to solve here.
Catherine, you lead the OpenNotes Initiative, which has worked to increase transparency in healthcare in related domains. I wanted to ask you about what concerns were initially raised about making clinical notes available to patients and what parallels you see with those concerns and immediate release of test results?
DesRoches (19:15): Many of the concerns that we’ve heard about test results—my patients will be upset, my patients will be confused, this is not for my patients, maybe some other patients but not my patients—were the exact same things we heard prior to OpenNotes implementation. So there’s a lot of parallels between the two. And this study suggests that there are a lot of parallels post implementation as well. We found across hundreds of OpenNotes implementations that clinicians tended to have the same set of worries no matter where they were. And post implementation, it was generally fine. Most of the things they worried about didn’t come to pass. The patients who read the notes loved it and it did not cause a lot of extra work for them.
The one difference with the test results is in that increase in messaging in the immediate hours after the result is released, and I do think that there needs to be more work in that area in how to deal with the volume of messaging. But on the whole, the worries and effects look the same, which suggests that this is really a cultural change that we’re going through here and it is just one more step on the road from the doctor owns the information about the patient to the patient being the owner of the information.
ONC would like to thank the researchers for undertaking this important study, which is among the first showing patients experience with immediate release, their positive attitudes, and the information needs resulting from immediate release. Learn more about information blocking.