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, according to a study published by Shimkhada et al in JMIR Public Health and Surveillance.
Role of Social Media and #BCSM
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.
For nearly a decade, the Breast Cancer Social Media community 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.
Photo credit: Getty
Study authors participated in the chat, which addressed five questions about barriers and potential solutions. During the 1-hour dialogue, 42 participants produced 288 tweets that generated 2.1 million impressions by users of the social media platform. Participants included 23 patient advocates, 7 doctors, 6 researchers or academics, 3 health-care providers, and 2 representatives of advocacy organizations. Tweets and responses from the chat were analyzed to generate a summary of potential policy recommendations to improve care for patients with metastatic breast cancer.
The researchers found that participants 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, 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, reported the authors.
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 patients with metastatic breast cancer. 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 study authors concluded, “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.”
Disclosure: Support for the study was provided by a California Breast Cancer Research Program Policy Initiative grant. For full disclosures of the study authors, visit publichealth.jmir.org.
