Taking the War on Cancer to the Web
There's a new weapon in the war against cancer: social media
TAKING THE WAR ON CANCER TO THE WEB
There’s a new weapon in the war against cancer: social media.
Cancer researchers, physicians, patients, caregivers and survivors have turned to social media as a resource for research, networking, patient care and support. University of Florida Cancer Center researchers and clinicians have engaged with colleagues on Twitter, recommended online support groups to patients and opened up new doors for social media cancer research.
Social Media: A cancer patient’s backstage pass to cancer information, research and support
Social media is like an all access pass — people have access to more information than ever before. For cancer patients, social media offers access to cancer information, research and communities.
Merry-Jennifer Markham, M.D., FACP, FASCO, associate director for medical affairs at the UF Health Cancer Center and social media editor for the American Society of Clinical Oncology’s (ASCO) Journal of Clinical Oncology, sees social media as a resource for patients and physicians.
“Social media has accelerated information to patients and to clinicians in a way that is probably mind boggling to both,” Markham said.
While it’s true that you can’t believe everything you read online, Markham thinks social media is a great way to find information from trustworthy sources and to spark important conversations with her patients.
“I love when patients bring to me things they’ve read on social media,” Markham said. “It’s a great way to start a conversation and can be a good segue into a conversation that you didn’t know you needed to have. It’s also a great opportunity to correct incorrect or misleading information that can be found on social media as well.”
Markham steers her patients toward resources that she has personally vetted and can trust. Her recommendations are:
- American Cancer Society
- Cancer.net
- National Cancer Institute
“My number one recommendation for patients is to actually talk to their physician about the information they want to be able to find or how they would like to use social media,” Markham said. “Their physician or someone within the clinic, perhaps a social worker, might be able to point them to some good online resources for both information and for support.”
Social media offers patients supportive communities to feel less alone. Markham said social media networking is especially important in areas where in-person support groups may be limited. Cancer patients can find support groups searching their type of cancer on Facebook or through hashtags on Twitter, such as #BCSM (breast cancer social media), #gyncsm (gynecologic cancers), #LCSM (lung cancer) and more.
Other online support resources Markham recommends are:
- blog.stupidcancer.org
- bcsm.org (Breast Cancer Social Media)
- lcsmchat.com (Lung Cancer Social Media Chat)
- gynsm.blogspot.com (Gynecologic Social Media)
“Social media has really opened up a world of potential for support for cancer patients,” Markham said. “They can find support within very focused groups centered around one type of cancer, a type of cancer with a mutation or just general cancer support. I think it’s a great thing for patients to have.”
Clinical research reaps the benefits of social media
While social media is undoubtedly making its mark on patient care as a whole, one of its greatest impacts on the cancer community has been making clinical trials easier to access than ever before. Greater access to cancer clinical trials — highly structured and scientifically rigorous experiments to test new treatments, improvements in care and scientific advancements — gives more patients the opportunity to receive novel treatments and allows researchers the opportunity to become one step closer to increasing the number of cures.
“We’re already seeing places and ways in which social media is helping to change the way in which we conduct research because of its availability, widespread use and inexpensiveness,” said Thomas George, M.D., FACP, associate director for clinical research at the UF Health Cancer Center. “I think it’s going to become more and more of a critical component of clinical research.”
In current studies, the UF Health Cancer Center is partnering with the National Cancer Institute and NRG Oncology to investigate the best ways to use social media for clinical research through a social media and patient engagement program. The program takes the scientific information that normally goes onto a clinical trial’s webpage and, with the help of patients, distills the information down into what is most important for patients to know. This information is then used in a social media campaign that directs patients and their caregivers to a patient friendly webpage.
“The whole goal is to bring the clinical trial information, awareness and participation opportunities directly to the patients where they live, which is on social media,” George said.
Aside from being a new way to recruit volunteers, social media also serves as a great messaging system, allowing researchers to push information and content to patients as a part of clinical research. Right now, because of privacy restrictions, the conversation is typically only one way, from researchers to patients, but George hopes that will change in the future.
“I think ultimately the real potential is to have the conversation be bidirectional, so you can actually have back-and-forth engagement, communication, sharing of information and real time adjustments of research,” George said.
Social media does not eliminate the boundaries of privacy when it comes to a patient’s health information. To ensure patient health information is protected, the Institutional Review Board (IRB) has strict social media engagement guidelines on aspects like how patients are approached, how the clinical trial is communicated, and what information can be shared.
The entire process of patients providing their consent to enroll into a clinical trial through social media also has to be well-vetted and pre-approved by the IRB. Patient participation must be voluntary and privacy has to be protected.
Although researchers must go through an approval process to use social media for clinical trial enrollment and participation, the benefits are worth the effort, George said.
“If five times the number of patients can be reached, in half the time, and you’re engaging with patients that normally wouldn’t have any way to participate in your research, it’s totally worth the efforts,” he said. “Advances in cancer care through research can be significantly accelerated if more patients are able to participate”.
Even in today’s highly connected world, cancer clinical trial researchers still have to overcome the difficulty of reaching underrepresented and underserved communities where internet is not as accessible. George hopes that over the next five years internet availability for these communities will be a national infrastructure priority and social media will be used even more.
“I think this has really tremendous promise for making clinical research a lot more available to more people and making the results of clinical research more relevant to more people,” George said. “By having more patients involved and more diversity in the patients who are involved, the faster we can find better treatments and the more relevant the results will be to everyone suffering from this disease.”
A surprising ally in the fight against cancer: “mommy bloggers”
It can be hard to find trustworthy online sources, especially when it comes to health information. A UF Health Cancer Center researcher has found a way to relay scientifically based breast cancer information to mothers through sources that women reportedly trust and relate to — “mommy bloggers.”
Carla L. Fisher, Ph.D., a cancer behavior scientist, set out to find a way to disseminate evidence-informed breast cancer messages that would resonate with mothers and daughters, motivating them to talk about environmental breast cancer risk and lifestyle changes they could make together to reduce their risk.
Fisher and her colleague Kevin Wright, Ph.D., of George Mason University, are scientists in the National Institute of Environmental Health Sciences’ Breast Cancer and the Environment Research Program (BCERP)—a program of scientists and community partners created more than two decades ago to identify environmental breast cancer risk factors. Through a NIEHS-funded study, Fisher and Wright teamed to develop a social media intervention to communicate environmental breast cancer risk information to mothers and daughters.
Fisher’s research shows that mothers and daughters are concerned about their risk but find talking about the topic challenging. Research demonstrates that online, third-party sources can help them navigate these conversations. Women who use the internet for health information and mothers often turn to “mommy bloggers,” women who make a living by blogging — online journaling — about motherhood and various aspects of life, as a trusted source.
“What we see in the research is that mothers often identify with mommy bloggers,” Fisher said. “They even, in a way, develop a sense of a relationship and a community within that social media group.”
The community of mommy bloggers presented Fisher and Wright an opportunity to distribute evidence-based information.
“With social media, you can cast a wide net, reaching more people,” Fisher said. “The dissemination can keep going on and on and on, because of the various connected platforms people use.”
Fisher and Wright developed partnerships with 75 mommy bloggers to spread evidence-based information from BCERP’s free online toolkit that was created for mothers. With their research team members, they created a shareable, un-editable infographic to incorporate into a blog post that provided mothers and daughters four action steps to take to reduce their risk. The researchers also provided the bloggers with an un-editable introduction paragraph to include to assure readers that the information was coming from a trusted source.
Keeping with the theme of their blogs, the mommy bloggers were encouraged to write the blog in a way that would resonate with their readers. With blogs being sharable, the message made it onto several platforms, such as Facebook, Pinterest and Instagram.
“We did see that there was an impact,” Fisher said. “It shows that this is an angle that we want to utilize more and a partnership that can bridge the social media community of mothers out there in society with the science community.”
The blog posts reached more than 400 mothers, and the impact didn’t stop at getting the message to a wider net of people — the researchers also found that mothers exposed to the blogs were more satisfied with the breast cancer risk information, more motivated to engage in risk-reducing behavior, and more likely to share the breast cancer risk reduction tips with their daughters.
“Mothers said that when the information is presented on something like social media, it’s much easier to talk to their kids because it’s less personalized,” Fisher said. “The information on social media can facilitate a less emotionally charged conversation about cancer, particularly in a way where you’re not scaring and frightening your kids.”
The dark side of social media: e-cigarettes targeting young adults
These days, electronic cigarettes are everywhere — even in the hands of young adults.
But being such a new product, the long-term effects, including their cancer risk, of e-cigarettes are still unknown. There has also been a lot of discussion surrounding the potential implications that vaping could have on younger people and several restrictions, such as flavor bans, have been helpful in curbing their use. However, one area of the cigarette industry remains underregulated: social media.
“There really is no regulation about what can be done in the social media environment, and this group of 18- to 24-year-old’s pretty much live online,” said Jordan Alpert, Ph.D., an assistant professor in the UF College of Journalism and Communications’ department of advertising. “They’re being exposed to messages that are glamorizing and glorifying e-cigarettes every day.”
Alpert set out to discover what impact the social media marketing of e-cigarettes has on young adults. He researched different brands and used documents from Phillip Morris International Inc., a cigarette and tobacco company, to study whether e-cigarette brands are using similar marketing strategies to target young adult consumers.
Alpert found that e-cigarette brands often tried to target their younger audience by making their products look “cool” with flavors and pop culture references.
“The big finding was that this kind of exposure to e-cigarettes really normalized them. They just became a typical, everyday thing that young adults see,” Alpert said. “It didn’t seem taboo or like anything was wrong with that. This constant exposure really normalized the activity for this age group.”
Brands often focused on an appeal of an overall lifestyle without even mention their products. For example, Alpert said, one advertisement showed a person lounging by a luxurious swimming pool and holding an e-cigarette pen — never directly mentioning the product but instilling in consumers’ minds that this would be a “cool” lifestyle they could live.
“The goal of this study was to bring more attention to the kind of marketing tactics that are going on and to try to have some discussion about any kind of regulations that could occur in the social media environment,” Alpert said.
Let’s Connect! Facebook helps researchers increase colorectal cancer screening rates
Today, Facebook is used by billions of people to stay connected with friends and family — but what if the social media site can be used to access more than photos and updates?
UF Health Cancer Center researchers Jiang Bian, Ph.D., and Yi Guo, Ph.D., turned to social media as a way to share information about cancer prevention.
“We were thinking about whether we could use social media to do some outreach and get people to get cancer screenings,” Bian said
In 2016, the researchers conducted a study that aimed to use Facebook to educate about colorectal cancer and influence people over the age of 50 to seek cancer screenings, which are tests that detect cancer. Bian and Guo developed a web application based on the National Cancer Institute’s self-assessment tool, which generates a patient’s five- to 10-year lifetime risk prediction based off of their family history, medications, diet, exercise and more.
“We used that mathematical model and developed a web app that allows you to calculate your cancer risk,” Bian said. “Then the application gives you tailored information to some of the free colorectal cancer screening resources within Florida.”
If interested in the study, participants would click on a link that would send a Facebook message to the user, leading them to the study’s web application, Guo said. To do the risk assessment, study participants were able to log in using their Facebook credentials.
“Most of the participants had gotten a cancer screening already,” Guo said. “But the intervention actually increased the screening rates in Florida.”
Social media isn’t always the study itself, but it is a component of a larger research study, Guo said. Social media has the power to connect researchers with participants and allow for user feedback.
“Social media is normally used as a supplement to other intervention delivery methods,” he said.
While it is a tool that is used to keep users engaged in research, social media has its limitations — the biggest being that researchers don’t have control of the platforms, Bian said. Bian hopes that researchers can work with social media companies to figure out ways to improve the platforms for the good of public health.
“As a researcher, I think our job is to figure out better ways to create trusted sources for cancer information,” Bian said. “We want to do more research to figure out what the best ways to use social media are.”