It seems to make so much sense: an online community of patients tapping into others with similar conditions and concerns, and sharing what they know to help others. But, no doubt, easier said than done.
John Novack oversees communications for the million-member healthcare social network Inspire, and will be shedding light on the topic, “Building Online Patient Communities With Social,” in a session at the upcoming Healthcare Social Media Summit Oct. 23 in Baltimore. In a recent interview, he touched upon key issues in building those communities.
Obstacles organizations face setting up an online patient community on social media: Trust, privacy, and value to the member are three crucial components to online communities for patients and caregivers, according to Novack. “It’s not easy to grow a disease-specific community to an appreciable size, and it’s even tougher to create and foster an online environment in which members share what can be emotionally wrenching, embarrassing or stigmatizing information,” Novack says.
He adds, “It sounds simple, but you’ve got to constantly ask yourself, ‘What’s in it for the person joining this community?’ from very early on. When members thank us for creating the Inspire community, we know they’re doing so because they find real value in it. If it’s perceived that the value of your community is flowing only to you, it likely won’t grow.”
Novack advises to involve the types of patients and caregivers you want in the community as you plan your launch. If you can’t find and involve them, he says that may be an indicator that you’re not ready.
The PR advantages of online patient communities: “I’m fortunate to have established relationships with many Inspire members who are open to talking to the media, or speaking at conferences,” Novack says. “Many patients and caregivers want to share their stories primarily because they feel those stories are going untold. We’ve had media placements that involve Inspire members who I have invited to participate in an interview, or speak at a conference alongside one of my colleagues—our head of research, for example.”
Novack cites one example from an article in STAT (https://www.statnews.com/2016/11/30/coming-to-life-after-death/) that occurred because he learned of the death of a longtime member of his lung cancer online support group. “The late member’s widow agreed to talk to a STAT journalist whom I knew had a specific interest in end-of-life issues,” Novack explains. “The article demonstrated the deep value of healthcare social networks, particularly those for people affected by life-threatening diseases. Moreover, the widow thanked me afterward for what she saw not as just an article, but as a tribute to her husband.”
Some media placements, Novack says, involve just the Inspire member, without a direct mention of Inspire, as the story didn’t warrant it. “And that’s OK, as helping get patients’ stories told is important to do for many reasons,” he notes. “In those cases, the journalists know that my interests are not solely to get my company into their stories every time.”
Managing and maintaining online communities for continuing success: It is key, according to Novack, to have clear community guidelines, and have the people and the commitment to managing the community. As a company with a healthcare social network, Inspire has invested in having full-time, trained moderators who staff the online community on Inspire.com around the clock, 365 days a year.
“Peer health networks allow members to make informed decisions with help from fellow members,” Novack says. “But one size does not fit all, and for us, we focus on ensuring that the members feel in control in how they want to navigate Inspire.com.”
He adds that organizations need to identify what the goals of the new community are in advance, and have everyone in leadership in agreement. “Creating and managing an online community can be a time-consuming process, so communities can quickly become a drain on resources, for little benefit,” he points out. “Ask yourself: Do you have the coverage in place from the start to ensure that your community will protect members from spammers and trolls?”
How much control the organization has in managing the discussions, and how much control is given to the patients and group participants: “At Inspire, we look to ensure there is respectful sharing of opinions among members,” Novack says. “We have more than 200 groups and our members represent some 3,600 conditions, so it’s not feasible to be an arbiter of medical information.”
Novack says Inspire partners with more than 100 nonprofit patient advocacy organizations, and involves them as subject member experts to help provide authoritative information to members. “It’s a delicate balance—we want to encourage members to be able to freely talk about their lived experience. We encourage members to not make radical decisions about their approaches to managing their conditions without consulting their physicians.”
Personal successes through an online patient community on social media: “As one of the public faces of Inspire, I have had the privilege of members telling me how important the online community has been to them,” says Novack. “Several times members have said, ‘You’ve saved my life,’ and what they mean is that they found a pathway to a lifesaving treatment through an online community. That’s humbling, and those examples demonstrate the power of healthcare social networks.”
Jim Alkon is a contributing writer for PR News and is currently Editorial Director of BookTrib.com, a website where readers discover emerging authors.