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Beyond Likes and Hashtags: Achieving Real Patient Engagement through Social Media

This week's post comes from guest bollger Sara Goldstein, JD. Goldstein is a health policy research analyst at ECRI Institute, an independent nonprofit organization located in Plymouth Meeting, Pennsylvania that researches the best approaches to improving patient care.

Two months after giving birth to her second child, 38-year-old Katherine Leon suffered a heart attack. Doctors informed Katherine that her heart attack resulted from a very rare condition known as spontaneous coronary artery dissection, or SCAD.

After finding little information online about SCAD, Katherine took to social media to seek out others with her condition. Katherine joined the online community of WomenHeart: the National Coalition for Women with Heart Disease. After compiling the stories of her fellow "e-patients," Katherine set out to find someone to research SCAD. She contacted Dr. Sharonne Hayes, a cardiologist at the Mayo Clinic, and urged her to study SCAD. Using social media, the efforts of these women led to the creation of a "virtual" multi-center SCAD study involving over 200 patients.

Katherine's story was among the social media successes that Dr. Farris Timimi, the Medical Director of the Mayo Clinic Center for Social Media, shared at a conference last month sponsored by ECRI Institute, a nonprofit organization that investigates ways to apply scientific research to improving patient care.

Unlike other industries, healthcare has been slow to adopt social media. According to a recent study conducted by Simon Associates Management Consultants, only 16% of U.S. hospitals are actively using social media. ECRI Institute's Healthcare Risk Control publication found that this low rate of utilization is due to concerns related to potential violations of federal and state privacy laws.

Despite these initial hesitations, more healthcare organizations are beginning to participate in social media to meet growing consumer demand. According to the Nielsen Company, social media use accounts for nearly a quarter of America's Internet usage. In addition, the Pew Internet and American Life Project found that researching healthcare information is the third most popular Internet activity for adults (after use of e-mail and search engines).

The healthcare organizations that are engaged in social media most often use it for marketing and brand awareness purposes, according to a recent survey conducted by the IT services firm, CSC. In the Philadelphia area, Thomas Jefferson University Hospitals is using social media to help promote dialogue with patients. According to Josh Goldstein, Jefferson's Director of Social Media, Jefferson has created new ways for consumers to connect with providers using social media, such as online forums where patients can ask medical experts questions on issues such as prostate cancer and heart disease.

According to Dr. Timimi, getting more healthcare providers to meaningfully engage with patients is essential. Using vaccination hesitancy as an example, Dr. Timimi illustrated how providers could use social media to impact patients. Parents' reluctance to vaccinate their children is on the rise. The information online about vaccines, much of which is not scientifically accurate, is cited as a reason for this trend. When parents delay or refuse to vaccinate, pediatricians do not have the time required to properly explain the risks. Dr. Timimi postulated that if the 60,000 members of the American Academy of Pediatrics were to each produce a "tweet" or a blog entry, physicians could regain the initiative and turn the weight of public opinion to rely on scientific evidence rather the beliefs of celebrity activists.

Healthcare providers, especially hospitals and physicians, need to take more steps to incorporate social media into how they deliver healthcare. It is essential that providers "meet" consumers where they are, and these days they are increasingly online.

-          Sara Goldstein, JD