As our devices and social networking sites have become more and more a part of our lives, we tend to find communities online with people who have similar interests and experiences. These communities can be very helpful to those battling breast cancer, as well. The groups don’t just create connections and understanding among members, though. A new study says they would be a good place for policymakers to look to improve care for these patients.
UCLA researchers joined a regular Twitter chat with the Breast Cancer Social Media community to better understand their discussions. Held on a weekly basis at a pre-arranged time and founded by two breast cancer advocates in 2011, the chats draw engagement from a variety of people using the hashtag #BCSM. The topic researchers joined was barriers to care and policy recommendations for patients with metastatic breast cancer. Their findings were published in the peer-reviewed journal JMIR Public Health and Surveillance.
The study authors said, “A growing number of patients use Twitter to connect with their peers as well as clinicians and researchers for information, psychosocial support, and research and advocacy opportunities; patients treated for breast cancer are one of the most engaged groups on social media platforms for this purpose.”
They went on to say that patients with metastatic breast cancer are typically on some kind of treatment for the rest of their lives, so they’re generally in close contact with their treatment teams and the hospital system. As a result, there was plenty of engagement in this particular chat.
Researchers say during the one-hour session, there were 288 tweets from 42 unique participants. Among them were patients, patient advocates, doctors, other health care providers, researchers, and representatives for advocacy organizations. These discussions were seen by a wide audience, as well, with 2.1 million impressions.
The first question was which communication barriers exist to getting care. Responses mentioned communication gaps between the patient and provider, especially about disease progression and quality of life. The time it takes insurance companies to respond was also mentioned. The second question dealt with palliative care, which manages treatment side effects and disease symptoms to improve quality of life.
The researchers said, “Chat participants noted that palliative care is not well integrated into metastatic breast cancer 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 year to year, and limits on the number of physical therapy visits covered by insurance.”
Metastatic breast cancer often has medications that are considered specialty or higher-cost, so that just added onto financial worries, especially for those with high-deductible plans. Understanding disability benefits was also a headache for many.
The chat veered to health system and policy changes that may help. Some participants suggested improving access to and financial help in getting to clinical trials, expanding the availability of nurse navigation for metastatic breast cancer, and developing a guide for treatment options and support resources once someone is diagnosed with metastatic breast cancer.
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The study authors said different metrics would be appreciated, too.
They wrote, “Chat participants noted that patients with metastatic breast cancer, compared to patients with nonmetastatic disease, have treatment decision preferences that focus far more on quality of life, and may benefit from protocols that require routine reporting of quality of life to providers.”
Researchers say reading these social media discussions is a good way to learn which policies may benefit patients of all kinds, not just those with breast cancer.
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