Cancer patients are increasingly messaging their oncology care teams through patient portals, but many health systems have started to bill for this messaging.1-5

This change could add to the financial distress cancer patients already experience, said Dana Hutson, founder of Cancer Champions, a patient navigation service based in Lorton, Virginia.

“There’s already such a financial toxicity associated with cancer treatment, a lot of out-of-pocket expenses the patient just doesn’t even dream of because oncology is such a different carve out from everything else,” Hutson said. “I think now having to be charged for just communication with their team is just going to pile on the financial toxicity.”


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Earlier this year, Becker’s Hospital Review reported that 14 US health systems had begun charging for patient portal messages.6 These systems are located across 7 states (California, Illinois, Ohio, Oregon, Pennsylvania, Texas, and Washington) as well as in Washington, DC.

One of the more recent health systems to implement a policy of billing for patient portal messages is Johns Hopkins Medicine in Baltimore, Maryland.7 The announcement of that change in July was met with some pushback from patients and advocates.

Anna Palmisano, PhD, director of an advocacy group called Marylanders for Patient Rights, said billing for patient portal messages creates another barrier to health care access and “shows a certain amount of greed on the part of the hospitals.” She also said it will disproportionately impact patients with low incomes and those without health insurance. 

“There are 400,000 Marylanders that don’t have health insurance,” Dr Palmisano said. “So those folks, when they see what this is going to cost, they’re not going to do it even though they may need it.”

The cost of patient portal messaging varies according to health system. Johns Hopkins and Cleveland Clinic in Ohio both say the maximum amount a patient would pay for a message would be $50. At University of California San Francisco (UCSF) Health, the maximum out-of-pocket cost would be $75. At Fred Hutchinson Cancer Center in Seattle, the cost could reach $98 per message for a patient with limited or no insurance.

The types of messages that are billed can also vary across health systems, but most systems say a message that requires medical expertise and takes 5 or more minutes to answer will be billed. Messages used to schedule appointments or refill prescriptions, for example, won’t be billed.

Impact of Billing for Messages

The impact that billing for portal messages will have on cancer patients is still unclear, but cancer patients’ use of portals has increased in recent years, and studies suggest patients have a favorable perception of portals.1-5,8,9

Hutson noted that, as care becomes more automated, some patients are having difficulty just getting practice staff on the phone to schedule an appointment.

“Once the portals opened up and patients saw the value of being able to communicate directly with their team, it’s been a godsend,” she said.

At the same time, patient portal messaging has impacted physicians’ workloads. In a recent study, researchers evaluated the volume and type of patient portal messages received by 132 oncologists at 21 hematology/oncology practices from June 1, 2021, to May 31, 2022.10

The researchers found that each oncologist received an average of 2530 message threads in a year, or about 7 threads per day. Overall, 41,272 patients started 334,053 unique message threads. The oncologists provided more than $11 million in medical care via these messages, including $3.8 million in avoided out-of-pocket co-pays and $7.7 in missed billing codes.

The oncologists largely responded to messages during office hours, but 22% of messages were sent outside of office hours.

Managing patient portal messages outside of work hours is common and sometimes required, according to A. Jay Holmgren, PhD, an assistant professor of medicine at the UCSF School of Medicine.

He noted, however, that billing for patient portal messages can decrease some of that burden for physicians. Dr Holmgren and his colleagues published an analysis in JAMA earlier this year on how billing for patient portal messages impacted the volume of messages received at UCSF Health.11 The mean number of patient messages the health system received fell from 59,648 per week before billing was implemented to 57,925 per week after.

Dr Holmgren said the researchers did not find evidence of patients switching to other forms of care, such as phone calls or scheduling telehealth visits, so he hopes the decrease is in low-value messages.

“You talk to any physician who does a good amount of care management in a patient portal, some of the messages you get are very low value. The response is often, ‘Wait 24 hours, wait 2 days, and see if it’s still an issue,’” he said. 

Dr Holmgren and Hutson both acknowledged that cancer care is complex, and a cancer patient using a portal will have different needs than patients seeking other kinds of care.

However, in the aforementioned study of 21 hematology/oncology practices, the researchers did find that 73% of messages to oncologists did not require oncologist review.10 Most messages could be managed by a nurse (38%), medical assistant (28%), or non-oncologist MD (7%).

Regardless of who manages patient portal messages, Hutson said more work needs to be done by cancer centers to prepare patients for portal use. At diagnosis, patients should be told when they will hear from their clinician, when they will hear from their nurse practitioner, and when and how they will be billed. The policies also need to account for the fact that cancer patients often have multiple care teams at different health care practices.

“I’ve got several cases now where patients are interacting between several different systems, so if you’ve got one system charging and one’s not…, it’s just going to add to confusion from a payer perspective,” Hutson said.

Dr Palmisano recommends that patients ask for an estimate of hospital charges before care is provided, which is something they are entitled to as part of the No Surprises Act.12 She also recommends that patients check their medical bills closely and save documents from health care providers. This can include printing out all responses from clinicians in the patient portal to have on hand in case a bill needs to be disputed.

“When you’re sick, you don’t think of these things, but it’s important,” she said.

Disclosures: Dr Holmgren reported grants from the American Medical Association and the Healthcare Leadership Council. Huston and Dr Palmisano 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. Isler A. Why you might get billed for messaging your provider in MyChart. VeryWell Health. Published January 3, 2023. Accessed August 31, 2023.

4. Noguchi Y. ‘Hi, Doc!’ DM’ing the doctor could cost you (or your insurance plan). NPR. Published July 21, 2023. Accessed August 31, 2023.

5. Diaz N. What 3 health systems are charging for MyChart messages. Becker’s Health IT. Published June 21, 2023. Accessed August 31, 2023.

6. Bruce G. 14 health systems that charge for patient portal messages. Becker’s Hospital Review. Published January 24, 2023. Accessed August 31, 2023.

7. Cohn M, Calefati J. Johns Hopkins Medicine joins national move to charge patients for messaging their doctor. The Baltimore Banner. Updated July 5, 2023. Accessed August 31, 2023.

8. 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

9. 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

10. Anderson B, Lyon L, Lee MJ, et al. Analysis of patient-physician portal secure message content and the associated cost savings in oncology practice. ASCO 2023. June 2-6, 2023. Abstract 1503.

11. Holmgren AJ, Byron ME, Grouse CK, Adler-Milstein J. Association between billing patient portal messages as e-visits and patient messaging volume. JAMA. 2023;329(4):339–342. doi:10.1001/jama.2022.24710

12. Know your rights when you aren’t using health insurance. US Centers for Medicare & Medicaid Services. Accessed August 31, 2023.