May is National Arthritis Awareness Month, a time to raise awareness about the number one cause of disability in the country: arthritis. According to the Arthritis Foundation, more than 50 million adults have doctor-diagnosed arthritis, and by the year 2040, that number is expected to grow to more than 78 million. A Patient-Powered Research Network (PPRN) for the PCORI-funded National Patient-Centered Clinical Research Network (PCORnet), AR-PoWER is using its unique and engaging voice to communicate with audiences through witty social media posts and creative events to increase awareness about arthritis and get individuals and communities involved in the movement toward improving the lives of those living with arthritis.
Created by CreakyJoints, the online, nonprofit patient support community for arthritis patients, AR-PoWER is the first ever patient-led, patient-centered research registry for arthritis, bone, and inflammatory skin conditions. AR-PoWER is designed to provide patients with a collaborative online platform to help combat joint, bone, and skin diseases; however, this registry is taking its work a step further. From clever Facebook and Twitter posts to eccentric fashion shows, AR-PoWER is redefining what it means to effectively connect and engage with audiences. Its newest addition? The launch of an optimized, interactive app designed to help patients continuously stay connected within the arthritis community and stay up to date on arthritis research through features that allow them to track their symptoms, medications and medical history and even capture biosensor data to monitor well-being.
With thousands of loyal Twitter followers, CreakyJoints is clearly doing something right within the social media landscape, so we welcomed the opportunity to sit down with social media guru for CreakyJoints and AR-PoWER, Joe Coe, to discuss tips and tricks to help other PPRNs and CDRNs boost their social media presence.
“Knowing how to effectively communicate your organization’s message on social media is one of the most important tools to have in your online arsenal. The best way to reach your audience is to meet people where they are already at, and today, that’s social media,” said Coe. “Simply posting on Facebook or Twitter whenever you get the chance isn’t enough. You have to find a unified voice for your organization and use it to build trust with your audience. Remember to be creative and take risks, and most importantly, remain adaptable. The online sphere is constantly evolving; what works for you today may not work for you tomorrow.”
In 2017, 81 percent of the population in the U.S. reported owning a social networking profile. That means that for organizations looking to engage audiences, the ability to navigate social media with savvy is crucial. Coe further elaborated on how other PPRNs like AR-PoWER can build a strong social media presence, including the following tricks of the trade:
- Social media is a visual medium—be sure to share visually stimulating images or graphics.
- Stay up-to-date on trending hashtags other healthcare organizations are using to capture those audiences in your posts. Not sure what those are? Check out Symplur, a free platform that connects you to the daily top trending hashtags in healthcare.
- Stay away from jargon and use language that is accessible.
- Keep it short and sweet—communicate your message in two or three sentences.
- Take risks! Clever or witty posts are excellent at engaging audiences.
Are you interested in learning more about how to effectively engage audiences through social media? Be sure to attend our Social Media Best Practice Sharing Session (BPSS) June 8, 2017 at 11:00 am EDT designed to help PCORnet’s Partner Networks effectively use social media to elevate their profile and boost audience engagement.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.