Have you ever shared details of your medical diagnosis on social media? If so, you are in good company. We know from our own online community that many people with skin cancer use social media as a tool to provide and receive comfort, share new treatment research and engage with other patients, physicians and resources.
When used wisely, platforms like Facebook, Twitter and Instagram can be great tools for connecting. The Skin Cancer Foundation’s followers frequently find ways to support each other online, adding to the conversation by sharing resources and links to trusted sources. Unfortunately, social media also provides opportunities for the rapid spread of misinformation and may not provide the same benefits as face to face interactions.
Where to Find Support Online
“There are lots of different types of support available online, through social media or websites that incorporate a social piece, like a chat room, message board or blogs that allow comments and discussion,” says Merry Jennifer Markham, MD, interim chief of the Division of Hematology and Oncology at the University of Florida, and associate director for medical affairs at the UF Health Cancer Center. Dr. Markham coauthored a review of social media use among oncology patients, with a goal of examining the benefits and drawbacks of social media and to encourage oncologists to become aware of these so they can more effectively guide patients. “These resources can simulate an in-person type support group but are clearly different, in that a patient or caregiver can participate in an online group at any time of day or night and from any location.”
Dr. Markham also points out that online groups are still a critical resource for patients who have in-person options available. She says some people may not be able to find a local group that fits their needs, or they may be uncomfortable attending an in-person support group. Connecting with other patients or experts online can provide the help they need. The paper does note that some studies have found that emotional support is higher in face-to-face situations but acknowledges that more research is needed to draw concrete conclusions.
Don’t Rely on “Dr. Facebook”
Dr. Markham’s review found that social media can also be beneficial for learning about your diagnosis and treatment. According to the paper, 72 percent of adult Internet users have searched for health information online, and in a survey of 1,745 adults, about 32 percent used social media for health information. Patients can use social media to locate resources and learn the basics of what their diagnosis means, find clinical trials they may qualify for and keep abreast of important research updates.
Due to the open nature of the internet, however, not all information on social media is reliable. Misinformation is an epidemic, and it can be difficult to parse accurate information from personal opinions, slanted narratives and flat-out lies. Retweeting or sharing questionable information can have a major impact online, as it can take only minutes for something to travel around the world to hundreds or thousands of users. There are ways to minimize the chances of consuming and spreading false information, though. “It’s important to identify the source of the information found online,” says Dr. Markham. “Did it come directly from a medical journal or did it come from a friend-of-a-friend or a news aggregator site? Patients and caregivers should ask their physician or other health-care professional for help identifying trustworthy sources of online information.”
Caregivers and Social Media
Are you helping a loved one grapple with a skin cancer diagnosis? Caregivers, friends and family can also use online platforms to provide information and encouragement. Sometimes, a loved one may be far from us while going through a difficult diagnosis, but that doesn’t mean we can’t share messages of support.
“When someone we care about shares information on social media about a tough diagnosis or health experience, it’s natural to want to express support and empathy,” says Dr. Markham. If you’re not sure what to say, she suggests acknowledging that. “For example, you could say, ‘I’m so sorry you’re going through this. I don’t know the right thing to say, but I’m here for you.’”
Dr. Markham discourages offering unsolicited advice and says the best things you can do are acknowledge what the person is going through and simply listen. That is good advice whether you’re online or in the same room.
Dr. Markham feels physicians have a responsibility to discuss social media with their patients as well. “It isn’t helpful to tell someone not to go online to find out about their diagnosis, because it’s a natural thing for people to want to do, and they’ll do it anyway,” she says. “Instead, physicians should serve as a resource for patients, helping to point out incorrect information or steer patients to sites with valid and helpful information.”
The benefits of reaching people and organizations around the world with just a mouse click are invaluable. Using social media to learn more about a diagnosis, find support and connect with other patients and caregivers, however, is by no means foolproof. Staying on the lookout for misinformation and untrustworthy resources is necessary at all times. The Skin Cancer Foundation is here to help, and you can be part of the solution.
May is Skin Cancer Awareness Month, a perfect time to share accurate, medically reviewed information about skin cancer. Visit our Skin Cancer Facts & Statistics page for all of the details. For graphics and resources to share with others, check out our #SharetheFacts social media toolkit. Visit our Skin Cancer Support Resources page for a list of organizations that provide guidance and assistance to patients and caregivers.