Early Access to EMRs May Improve the Patient Experience in Oncology

Joleen Hubbard, MD, explains why allowing access to results can improve patient’s outlook on treatments and understanding of their disease.

Patients having immediate access to their electronic medical records (EMR) following imaging or testing results has been a controversial topic across the medical field, specifically that of oncology.¹

A recent presentation from the 2024 American Society of Clinical Oncology (ASCO) Annual Meeting assessed both the patient and provider perspectives and how it may be more beneficial than harmful for patients to have access to their results early. Joleen Hubbard, MD, a medical oncologist from Allina Health in Minneapolis, Minnesota, focused her discussion on how to communicate with patients and make the EMRs a beneficial resource for them.

In her presentation, she discussed the 21st Century Cures Act, which was established in 2016 to help accelerate medical product development and produce more innovation.² Additionally, it allowed for patient information to be stored in a digital format that could be easily accessed. The 2021 Information Blocking Rule, part of the Cures Act, mandated that patients be given access to their EMRs without delay. If results were delayed, large fines could ensue.³

According to Hubbard, as someone who had learned to carefully deliver bad news in person, she worried about how patients would feel when receiving results without a proper way to interpret them.At first, she wondered if these new rules were harmful to patients.

She noted that patients can achieve 3 different benefits by early access to their EMRs: improved patient knowledge and engagement, better transparency and trust, and superior patient outcomes.

Improved Patient Knowledge and Engagement

A study by Walker et al found patients who had access to their EMRs were more empowered to know their medical condition, could recollect the management plan, felt more in control, and were more prepared for their visits.⁴ Of note, of the 28,782 patients polled, 3.3% felt more confused, and 4.83% were worried after receiving access to the EMR.

In a letter published in Cancer Cell, Salmi et al found that patients who were older, less educated, non-White or Hispanic, and non-English speaking had more of a benefit from seeing their results online.⁵ The letter also noted that of the 96 oncology clinicians polled, 70% agreed that note-sharing was a good idea, and of the 3418 patients, 98% agreed.

Improved Transparency and Trust

Clinician’s initial fears were that early receipt of EMRs may degrade the patient’s trust. However, a study by Bell et al found of 4592 patients, 37% felt better and 62% felt the same about their doctor after receiving notes.⁶ Of the 99 doctors who utilized early access to EMRs, after 1 year 53% believed patient satisfaction was increased and 51% trusted patients more.

Patients who evaluated their visit notes and saw information was accurately reported had higher levels of confidence. Leveille et al analyzed 21,644 patients and 96% understood all or nearly all the notes left by their clinicians.⁷ Common suggested improvements included the structure and content of the note, the jargon used, and the accuracy behind it.

When patients review clinician notes and see that medical history up to the present illness has been reported, they feel confident they have found quality care.⁸ Patients also felt they had a sense of control and could ask questions to their provider during the visit.

Improved Patient Outcomes

Hubbard noted that when patients are engaged in their care, the better their health outcomes will be.⁹ Additionally, this allows them to be more prepared for their visits, can bring more in-depth questions, and can refer to their notes for better recollection of health plans. Patients may also use electronic or online sources to review supportive care measures to improve adverse effects and quality of life.¹⁰

Patients who are now involved with their care can review their charts for accuracy.¹¹ Hubbard said this was important especially as artificial intelligence is being used to screen patients for clinical trial enrollment.

Adapting to EMRs

Anxiety can be a prevalent emotion for patients, and having early access to their notes can alleviate some of that.⁸ However, one-third of patients in a Journal of Clinical Oncology study regretted reading their notes, and some even wished the notes could be restricted. Even still, some did not feel like way until they were diagnosed with cancer.

There have been studies focused on whether or not withholding results until a face-to-face interaction was beneficial.¹² However, most have not been cancer-specific. Most patients preferred to be given news in an immediate fashion. Of 8139 respondents in a recent study, 16.5% had increased worry with abnormal results vs 5.0% who had normal results. Overall, 95.3% of patients would like to continue to receive immediate access to their results no matter the outcomes.

Hubbard has learned how to adapt to patient anxiety in a few ways. Most importantly, she asks how and with whom they would like to receive the information. To avoid calls after the results have been posted, she sets an in-person or virtual call to go over the results and ensures all questions will be answered at that time.

One challenge was found in those with immediate access to results, 40% wanted additional information and turned to either the internet (39.9%), another provider (14.1%), or a family member (9.0%). These potential sources of information can turn into challenges as they may display best or worst case scenarios, treatment recommendations may be given by non-professionals, and patients now have to disseminate which information is valid or reliable.

One way to avoid misinformation is to discuss the challenges of searching for solutions online. Emphasize how they may not be applicable to the specific type of cancer, and let the patient know you will personally go over all recommendations at the follow-up appointment. Finally, provide patients with a source of reputable information for them to turn to when they have questions.

References

1. Hubbard J. When bad news comes through the portal: strengthening trust and guiding patients when they receive bad results before their clinicians do. Presented at the 2024 American Society of Clinical Oncology Annual Meeting; Chicago, IL. May 31-June 5, 2024.
2. 21st Century Cures Act. FDA. January 31, 2020. Accessed June 11, 2024. https://shorturl.at/W7hRR
3. Brooks JV, Zegers C, Sinclair CT, et al. Understanding the Cures Act Information Blocking Rule in cancer care: a mixed methods exploration of patient and clinician perspectives and recommendations for policy makers. BMC Health Serv Res. 2023;23(1):216. doi:10.1186/s12913-023-09230-z
4. Walker J, Leveille S, Bell S, et al. OpenNotes After 7 years: patient experiences with ongoing access to their clinicians' outpatient visit notes. J Med Internet Res. 2019;21(5):e13876. 2019;21(5):e13876. doi:10.2196/13876. Published correction appears in J Med Internet Res. 2020;22(4):e18639. doi:10.2196/18639
5. Salmi L, Dong ZJ, Yuh B, Walker J, DesRoches CM. Open notes in oncology: patient versus oncology clinician views. Cancer Cell. 2020;38(6):767-768. doi:10.1016/j.ccell.2020.09.016
6. Bell SK, Mejilla R, Anselmo M, et al. When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient-doctor relationship. BMJ Qual Saf. 2017;26(4):262-270. doi:10.1136/bmjqs-2015-004697
7. Leveille SG, Fitzgerald P, Harcourt K, et al. Patients evaluate visit notes written by their clinicians: a mixed methods investigation. J Gen Intern Med. 2020;35(12):3510-3516. doi:10.1007/s11606-020-06014-7
8. Kayastha N, Pollak KI, LeBlanc TW. Open oncology notes: a qualitative study of oncology patients' experiences reading their cancer care notes. J Oncol Pract. 2018;14(4):e251-e258. doi:10.1200/JOP.2017.028605
9. DesRoches CM, Bell SK, Dong Z, et al. Patients managing medications and reading their visit notes: a survey of OpenNotes participants. Ann Intern Med. 2019;171(1):69-71. doi:10.7326/M18-3197
10. Blease C, Dong Z, Torous J, Walker J, Hägglund M, DesRoches CM. Association of patients reading clinical notes with perception of medication adherence among persons with serious mental illness. JAMA Netw Open. 2021;4(3):e212823. Published 2021 Mar 1. doi:10.1001/jamanetworkopen.2021.2823
11. Bell SK, Bourgeois F, Dong J, et al. Patient identification of diagnostic safety blindspots and participation in "Good Catches" through shared visit notes. Milbank Q. 2022;100(4):1121-1165. doi:10.1111/1468-0009.12593
12. Steitz BD, Turer RW, Lin CT, et al. Perspectives of patients about immediate access to test results through an online patient portal. JAMA Netw Open. 2023;6(3):e233572. doi:10.1001/jamanetworkopen.2023.3572