Information shared by women with metastatic breast cancer on social media platforms like Twitter may be a timely source of data for policymakers hoping to improve care and outcomes for these patients.
UCLA researchers found that participants in a Twitter group chat about metastatic breast cancer identified a number of significant barriers to care, including communication gaps between health care providers and patients, delays in insurance authorizations for treatments and other procedures, insurance denials of palliative or specialized care, and challenges in obtaining disability benefits.
Based on participants’ online comments, the researchers say, patients could benefit from a variety of policies, including those that would improve access to clinical trials and expand the availability of nurse navigators who work with patients to overcome barriers to care.
Metastatic breast cancer survival rates are low and are impacted, in part, by time-sensitive access to care factors that may be improved through policy changes. Online communities have formed to provide support for patients and foster collaboration among patients, clinicians, advocates and researchers.
The Breast Cancer Social Media community for nearly a decade has hosted regular Twitter chats, online conversations at a designated time about a particular topic, with participants using a specific hashtag (#BCSM) for their posts. The group hosted a November 2019 chat on barriers to care and policy recommendations for patients with metastatic breast cancer.
The UCLA researchers participated in the chat, which addressed five questions about barriers and potential solutions. During the one-hour dialogue, 42 participants produced 288 tweets that generated 2.1 million impressions by users of the social media platform. Tweets and responses from the chat were analyzed to generate a summary of potential policy recommendations to improve care for metastatic breast cancer patients.
Online communities may provide timely, useful information for policymakers and other decision-makers to create actionable policies to bridge the gap in needs and services for metastatic breast cancer patients. They may also provide insights on how to best deliver resources and care amid the COVID-19 pandemic, with the health care system responding to rapidly changing needs from diverse communities.
The UCLA study authors are Riti Shimkhada, Deanna Attai, AJ Scheitler, Susan Babey, Beth Glenn and Ninez Ponce. The authors are affiliated with UCLA’s Center for Health Policy Research, David Geffen School of Medicine, Jonsson Comprehensive Cancer Center and Fielding School of Public Health.
The study is published in the peer-reviewed journal JMIR Public Health and Surveillance.
Support for the study was provided by a California Breast Cancer Research Program Policy Initiative grant.