Good4Patients: How Patients Go Public With Their Illness…Or Not.
At Rx4good, we firmly believe that there isn’t just one patient experience, and never just one patient voice, which is why understanding diverse patient populations is so important when developing engagement strategies to reach patients and caregivers. That perspective was borne out in this weekend’s New York Times (3/4/17), where Bruce Feiler reports that going public – or not — with news of one’s medical condition is deeply rooted in individual privacy preferences, disease state, age and social engagement comfort levels.
In “Whom Do You Tell When You’re Sick? Maybe Everyone You Know,” Feiler notes that older people tend more towards secrecy and younger towards disclosure. But medical conditions can also impact a person’s willingness to share their illness with others, says Feiler who wrote about his own mother’s decision to keep relatively minor surgery a well-kept secret. Heidi Adams, Rx4good’s Chief Patient Advocate and a lifelong advocate for people with cancer, says in the article that it’s a very individual decision. She noted that young people live out their lives on social media so naturally may be inclined to over share information. She recommends communicating more conservatively at the beginning, knowing that you can open up your privacy settings later on, but that it’s hard to put the genie back in the bottle once you share more broadly. And if you designate a surrogate to communicate on your behalf, don’t hesitate to set parameters for that person.
Feiler also noted that sometimes sharing can have the unexpected benefit of allowing a patient to help others in similar situations. We believe this desire to help is why so many patients are willing to share deeply personal information and experiences with companies during ad boards and other research forums. The personal risks of information-sharing make it even more important to be respectful of their contributions by creating a comfortable environment for information sharing, getting creative with interview methodologies and sharing back results.
No matter the style of sharing, going public can have an unexpected side effect, notes Feiler. It gives patients a sense of control over their lives at a time of often intense helplessness. To read the full article, click here.