JMIR Publications

ABSTRACT

Background:

Background:

Real-time, rapid assessment of barriers to care experienced by patients can be used to inform relevant healthcare legislation. In recent years, online communities have become a source of support for patients as well as a vehicle for discussion and collaboration among patients, clinicians, advocates, and researchers. The Breast Cancer Social Media (#BCSM) community has hosted weekly Twitter chats since 2011. Topics vary each week and chats draw a diverse group of participants. Partnering with the #BCSM community, we used Twitter to gather data on barriers to care for patients with metastatic breast cancer (MBC) and potential policy solutions.

Objective:

Research objective: This study was part of an assessment of the barriers to care for MBC with the goal of offering policy solutions for the legislative session in California.

Methods:

Methods:

We provided five questions for a chat specific to MBC care barriers and potential policy solutions. These were discussed during the course of a #BCSM chat on November 18, 2019. We used Symplur analytics to generate a transcript of tweets and a demographic profile of participants.

Results:

Results:

There were 289 tweets from 42 users, generating 2.1 million impressions during the one-hour chat. Participants included 23 patient advocates (most of whom were patients themselves), 7 doctors, 6 researchers/academics, 3 health care providers (2 nurses, 1 clinical psychologist), and 2 advocacy organizations. Participants noted communication gaps between patient and provider especially as related to the need for individualized medication dosing to minimize side effects and maximize quality of life. Timeliness of insurance company response, for example to authorize treatments, was also a concern. Chat participants noted that palliative care is not well integrated into MBC care and that insurance company denials of coverage for these services were common. Regarding financial challenges, chat participants mentioned unexpected copays, changes in insurance drug formularies that made it difficult to anticipate drug costs, and limits on the number of physical therapy visits covered by insurance. Lastly, on the topic of disability benefits, participants expressed frustration about how to access disability benefits. When prompted for input regarding needed health system and policy changes, participants suggested a number of ideas, including expanding the availability of nurse navigation for MBC, developing and offering guide to the range of treatment and support resources MBC patients, and improving access to clinical trials.

Conclusions:

Conclusion: MBC survival rates are low and in large part conditioned by time-sensitive access to care factors that might be improved through policy changes. Rapid assessments drawing from online community insights may be a critical source of data that can be used to ensure more responsive policy action to improve patient care. Clinical Trial: None, not a trial study