“We’re rare, but we’re everywhere.”
Wow, did those words resonate. At a recent healthcare communications conference, members of our team had the good fortune of listening to a panel discussion entitled “The Connected Patient.” Among the participants were a three-time cancer survivor and breast cancer support group Twitter host, a young woman and author who has dealt with chronic illness her whole life, and a self-described “e-Parent” who made the above statement when referring to her own unique circumstances (more on that in a minute).
The gathering was a discussion on the ways in which social media and online communities can truly connect and support those who may have been left to their own limited devices in the pre-internet era. The first panelist was able to best articulate that evolution, having battled her first bout with cancer – lymphoma – in the early 1990’s, and then successfully beating breast cancer in 2004 and 2007. The glaring difference between the two decades, in terms of taking proactive steps to seek out reliable health information? “Google!” she said.
The internet proved even more crucial for the e-Parent on the panel, a highly educated, multi-degreed professional who found herself swirling when she became the mother of a “medically complex” child – a term she described as meaning there is something wrong, but a team of specialists and geneticists were unable to pinpoint it.
In her case, the journey led to an introduction to the CHARGE syndrome community, a group focused on an extremely perplexing genetic birth defect with widely varying characteristics. With such a limited population, the odds of finding a family with similar challenges would have been nearly impossible prior to the social media wave. Today, the CHARGE Facebook page has over 4400 members, many of whom meet in person once a year to share information, ideas, and life-changing friendship.
The author and speaker discussing chronic illness had a similar story; having been misdiagnosed from birth to her early 20’s, she had lived her childhood in hospitals more than she was out of them. An eventual diagnosis of PCD – Primary Ciliary Dyskinesia – made her one of approximately 25,000 people worldwide with the disease; she estimated that less than 1,000 of those were accurately diagnosed. Imagine her difficulty in finding those with shared experience without the reach of the internet. Today, she is linked to fellow PCD patients all around the world, able to offer emotional support to those just joining the community, and able to gather the intellectual support she seeks as a person maintaining her health.
Healthcare is about the patient. Patients are social beings.
The takeaway from the discussion couldn’t have been clearer. The power of social media is beyond measure when it comes to those seeking healthcare information, particularly those who have farther to look. Whether frightened by a new diagnosis, investigating treatment options, or researching for a loved one, we immediately jump online to not only find information, but to hopefully find it from those with real life experience. There is simply no substitute for finding that person – across the country or the globe – who can say to us “I’ve been there too.”
Let them lead the discussion.
This mindset blends into the way in which we plan PR campaigns as well. Think about it from a personal perspective. If you have been recommended for knee surgery, are you paying more attention to the print ad you saw about the surgical center in your area? Or are you asking friends, neighbors, and coworkers to find someone who has had knee surgery there, and to gather details about their experience?
When it comes to healthcare PR, it is crucial to recognize that care is no longer entirely driven by the caregiver. Messages are relationship driven, with the patient often at center stage. An ad touting the superiority of a medical center’s capabilities will make some headway from a marketing perspective, but conversations between patients discussing their first-hand experiences there will reach far beyond the normal scope.
Whether you want to connect physicians to potential patients, encourage patient discussion around a new medication, or open a forum for collaborative patient support, we can help you to shape the social media strategy which is best for you. At Kovak-Likly, we know healthcare, and we know communities. Let’s build some together.
-BML
