There’s no overestimating the importance of peer support and patient advocacy groups are perfectly placed to facilitate this service.
The Patient Empowerment Network’s (PEN) Empowered Patient Chat (#patientchat) held on Facebook and Twitter, brings people together to learn from and support each other.
“Living with a disease or other chronic condition is challenging for patients, their families and friends,” says Kara Rayburn, Director of Digital Communications and Engagement at the group, which marks its 10th anniversary this year.
Strength in peer support
“Empowered Patient Chat brings patients, care partners, healthcare professionals and advocates together to share, communicate and discuss important topics.
“The community is guided by a belief in keeping the patient perspective at the forefront of all healthcare interactions, the strength of peer support, and the power of shared decision making.”
Despite PEN being a cancer-focused group, Executive Director Andrea Conners says the bi-weekly chats are open to anyone living with any long-term condition.
“Anyone who wants to talk about issues that are universally applicable to patients and care partners is welcome,” she notes, adding that the online health education events attract people from all walks of life. One recent #patientchat on social determinants of health achieved more than 1.4 million impressions.
Empowerment is a universal issue
“Empowerment is a universal issue, not disease-specific. It’s available to everyone so they can talk about the issues that affect them through navigating the healthcare system and dealing with illness,” Andrea explains.
Previous topics have been wide ranging. They have included disparity in clinical trials, understanding medical research and health technology, as well as psychosocial issues such as self-care, stress and isolation.
Programs like Empowered Patient Chat, Kara adds, work to boost confidence and understanding. “Our main aim is to provide a safe space for meaningful dialogue and ensure patients and care partners know they are not alone in their healthcare experience.”