Another issue is disparities in the use of patient portals. In a 2018 study of more than 19,000 cancer patients, Dr Gerber and colleagues found lower portal use among Black patients and Spanish-speaking patients.1
In a study of more than 200,000 patients published in 2021, Dr Hong and colleagues observed lower levels of patient portal enrollment among Black and Hispanic patients, non-native English speakers, those older than 70 years, and non-partnered patients.10
Research has revealed various barriers to patient portal use, including lack of awareness about portals, lack of computer access, difficulty enrolling, and concerns about privacy.2,11-12
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“It’s disappointing when new technologies that could and should flatten disparities end up exacerbating them,” Dr Warner said. “Each of these [barriers] has different root causes, which need to be better understood before we as a medical community can offer effective solutions.”
Dr Gerber noted that some patients may simply prefer to have discussions with providers in person or via phone or telehealth. “But if some patients are not using portal technology because they don’t have access or don’t understand how, we need to address those issues,” he said.
In an attempt to reduce disparities, Dr Hong and colleagues have taken steps to make enrolling in patient portals easier, and he cited translation for non-English speakers as a high priority. He noted, however, that “there are some barriers that are really challenging to overcome, like access to computers or smart phones.”
Discussing Portals With Patients
Drs Hong, Gerber, and Warner all emphasized the importance of discussing portals with patients in advance and clarifying their individual preferences regarding the types of information they want to receive through portals and how quickly they want to receive such information.
“Talk with your patients about their information habits and needs,” Dr Warner advised. “This shouldn’t be just another form that a patient fills out in the waiting room. It’s part of the overall discussion of goals of care that should happen between the managing clinician and the patient.”
Dr Gerber initiates this discussion with patients early and explains that “it is their decision whether or not they want to review results, particularly those important to the disease status, such as radiology studies, before they meet with me.”
“I remind them that these tests never come back with a result of ‘normal’ and that many of the terms in the reports, although quite scary-sounding, may, in fact, be expected and harmless,” he said.
Dr Hong agreed that it can be helpful to have advance discussions to advise patients “that they will receive results immediately, how you’ll follow-up with them once the results come through, and the potential outcomes of the tests and corresponding next steps.”
He also emphasized the importance of ongoing dialogue between physicians and their practice or institution to help establish workflows and delineate responsibilities associated with patient portals.
Ongoing Research and Needs
Dr Warner noted that, while access to portals and the timing of data release are important topics, a narrow focus on these issues is “somewhat obscuring the true potential of patient portals.”
“What does an engaged digital patient look like?” he asked. “Are they more likely to catch errors, report side effects early, and more actively participate in care decisions? Might they even live longer because of digital engagement?”
Dedicated research is needed to explore these questions, Dr Warner said.
Dr Hong said there is a need to study and implement interventional strategies to address disparities and other limitations associated with the use of patient portals, with the aim of ultimately identifying best practices in these areas.
More broadly, there is an ongoing need for data to inform policy decisions regarding patient portals, as there is currently a dearth of evidence on this topic.
“How and when to release medical test results to patients should reflect patient safety, patient preferences, provider input, clinic personnel feedback, and operational efficiencies,” Dr Gerber said. “We need to study these and other considerations to inform how we can best implement rapidly evolving technologies.”
Disclosures: Dr Gerber, Dr Warner, and Dr Hong have no relevant disclosures.
References
1. Pho K, Lu R, Gates S, Xie Y, Lee SJC, Gerber DE. Characteristics of patients using patient portals in oncology. JAMA Oncol. 2018;4(3):416-418. doi:10.1001/jamaoncol.2017.5257
2. Coughlin SS, Caplan L, Young L. A review of web portal use by oncology patients. J Cancer Treatment Diagn. 2018;2(6):10.29245/2578-2967/2018/6.1154. doi:10.29245/2578-2967/2018/6.1154
3. Zaidi M, Amante DJ, Anderson E, et al. Association between patient portal use and perceived patient-centered communication among adults with cancer: Cross-sectional survey study. JMIR Cancer. 2022;8(3):e34745. doi:10.2196/34745
4. Alpert JM, Morris BB, Thomson MD, Matin K, Brown RF. Identifying how patient portals impact communication in oncology. Health Commun. 2019;34(12):1395-1403. doi:10.1080/10410236.2018.1493418
5. Dworkowitz A. Provider obligations for patient portals under the 21st Century Cures Act. Health Affairs Forefront. Published May 16, 2022. Accessed February 8, 2023.
6. Preventing patient harm. American Medical Association. Published 2022. Accessed February 8, 2023.
7. Latulipe C, Mazumder SF, Wilson RKW, et al. Security and privacy risks associated with adult patient portal accounts in US hospitals. JAMA Intern Med. 2020;180(6):845-849. doi:10.1001/jamainternmed.2020.0515
8. Steitz BD, Sulieman L, Wright A, Rosenbloom ST. Association of immediate release of test results to patients with implications for clinical workflow. JAMA Netw Open. 2021;4(10):e2129553. doi:10.1001/jamanetworkopen.2021.29553
9. Adler-Milstein J, Zhao W, Willard-Grace R, Knox M, Grumbach K. Electronic health records and burnout: Time spent on the electronic health record after hours and message volume associated with exhaustion but not with cynicism among primary care clinicians. J Am Med Inform Assoc. 2020;27(4):531-538. doi:10.1093/jamia/ocz220
10. Sinha S, Garriga M, Naik N, et al. Disparities in electronic health record patient portal enrollment among oncology patients. JAMA Oncol. 2021;7(6):935-937. doi:10.1001/jamaoncol.2021.0540
11. Santos AD, Caine V, Robson PJ, Watson L, Easaw JC, Petrovskaya O. Oncology patients’ experiences with novel electronic patient portals to support care and treatment: Qualitative study with early users and nonusers of portals in Alberta, Canada. JMIR Cancer. 2021;7(4):e32609. doi:10.2196/32609
12. McCleary NJ, Greenberg TL, Barysauskas CM, et al. Oncology patient portal enrollment at a comprehensive cancer center: A quality improvement initiative. J Oncol Pract. 2018;14(8):e451-e461. doi:10.1200/JOP.17.00008
