How to align with patients on social media

Jessie Gruman, who has been diagnosed with cancer four times, draws on her own experiences to inform her work as president of the Center of Advancing Health. She keynoted the final day of the Connecting Healthcare + Social Media Conference in New York earlier this month, with thoughts on what patients want to see from a healthcare organization's social media efforts.

"Many of us personally know healthcare is a delicate balance between the cognitive and emotional, the subjective with objective and individuals with populations. Websites are an ever-changing puzzle, and as we become more familiar with looking for health things online…social media makes this puzzle less puzzling for us."

Gruman outlined six areas in which organizations can align with what patients want from social media:

1. To find information quickly. As a patient advocate and someone running a nonprofit, Gruman said, social media was a "bright spot," and she was "dazzled by how easy it was to find basic information about a disease." Once she started treatments, though, Gruman said her need for social media slightly shifted. "I was really weak and sick and feeling bad; it snuffed out all my curiosity in any form," she added. "I looked for specific answers to specific questions online – I wanted to spend as little time as I could getting answers. I was cautious but I wasn't curious."

2. To have information streamlined. When turning to the Internet for information, Gruman said an organization's ability to streamline information – making it easy to find and understand for the patient – was key. "I only need to know what I need to know when I need to know it," she said. "It's representative of many people in this country." She added that organizations need to not "be seduced" into believing because there are more people online, that means a "slam dunk" for social media. Instead, she said, "the opportunities are there, but they're strategic and focused and require energy and resources to realize." Access, she concluded, is just one part of the puzzle, and having clear, concise information readily available will make all the difference. "Those of us who lack literacy skills, cognitive capacity, experience, enthusiasm and confidence may have trouble with this and may not be adapting to it anytime soon," she said.

3. A clear understanding of the aging population. The assumption that older patients have adult children to interact with via social media and be on mobile phones is dangerous, said Gruman. "Be careful with this assumption. It's true for some, but not a lot…we need to reconsider that as we have this large group of people who are still kicking and using a lot of healthcare; they're struggling to get good care when it's difficult to navigate." People are going to age out, along with the doctors who won't use e-mail and still chart notes with pens, she said. "It's the older of us using healthcare the most. What's social media going to do for us?"

4. To be engaged. Patients "live and die by HCAHPS," Gruman said, referring to the Hospital Consumer Assessment of Healthcare Providers and Systems survey. "HCAHPS scores indicate to you whether we think it's important that we engage in care, that's it's possible for us to do so, and it's safe for us to do so. Good HCAHPS scores indicate that we believe hospitals and clinicians are all of these things." Yet, only one-third of patients actually consider themselves engaged, she noted. In reality, patients don't track changes in healthcare and aren't up-to-date on, for example, new drugs, procedures, etc. "One lesson I draw from listening to people talk is that there's opportunity to use social media tools to target those of us who are online to help understand how to get good care," said Gruman. "And in the process of doing behavior engagement, [it's about] offering the kinds of information people need to get their care and knowing the basic barriers."

5. To help with the practical parts of care. Gruman added that healthcare tends to be a last resort for patients, and by the time a patient does reach out to a health professional, they're looking for specific information – not general answers. "There's urgency in our need, and we don't associate clinicians with general health information. We can get that anywhere," she said.

6. To help with the healing process. Finally, said Gruman, being sick is "serious business for us…embedded in enthusiasm for social media, there's a sole assumption that being actively engaged with new technologies can somehow substitute for the pain and discomfort of illness." It doesn't, Gruman said, and instead, the experience and value of social media, for a sick patient, is more tactile and less transformative. "It's part of all our lives; all of us want to feel energetic and happy. We don't want to be distracted by pain, discomfort and sadness, but keeping ourselves alive is serious business. We don't want to learn new IT on the off chance it'll help us – we want IT to be efficient and useful and help us take care of ourselves and our loved ones, so we can live lives that are fun."