CPAN Advocacy Chat: Cancer and the Power of Social Media

Advocacy Groups | <b>COA Patient Advocacy Network</b>

Social media can be a powerful tool to inform and empower patients facing cancer, family members and caregivers, the entire cancer care team, and providers in all medical specialties.

The June 2021 Advocacy Chat topic was Cancer and Social Media. Our guest speaker was Dr. Sanjay “The Onc Doc” Juneja, a board-certified oncologist and hematologist at the Hematology Oncology Clinic in Baton Rouge, LA. He appears on multiple social media platforms and has almost a half million followers and subscribers. Dr. Juneja joined Rose Gerber, Director of Advocacy and Education at the Community Oncology Alliance (COA), to share tips on how to use social media as a tool for cancer advocacy and education.

CPAN Advocacy Chats are our regular virtual events where a guest speaker is invited to join us to discuss issues important to advocacy and advocates in a 30-minute webinar. Click here to access a calendar and register for upcoming CPAN events.

How Oncologists Can Use Social Media

Oncologists can use social media as an educational and advocacy tool. It allows the delivery of diverse information on serious subjects via a less intimidating format. Dr. Juneja’s personal social media showed him the opportunity to break down resistance and close the information gap created by misconceptions and outdated perceptions of cancer, its treatment, and survival prognoses.

Some people may not see the need for regular screenings because they mistakenly presume cancer is an incurable disease for which there is no treatment, so screening to identify the disease is of no value. These ideas are most often perpetuated based on fear and lack of information about cancer. However, in 2021, information can be provided on an interface that is difficult to ignore. While Facebook and Twitter are the most common social media platforms, one of the newest platforms is TikTok which offers a forum to present valuable and educational information by video.

For example, Dr. Juneja created a TikTok video about a patient who presented with a dark spot on a fingernail. There had been no accident or injury, and the dark spot had uneven coloring and irregular borders. Dr. Juneja suspected the spot might indicate that the patient had melanoma. His suspicions were correct. He was able to inform viewers of this indicator, as well as explain the advances in melanoma treatment that can allow patients in Stage 4 to get immuno-therapy with a combination of drugs to achieve up to a 40 percent response rate and remission for a period of 12 to 18 months.

Social media is also an excellent tool to increase the number of patients that can be reached in a day. The average oncologist may see from 20 to 40 patients per day. By contrast, online social media postings can reach tens or hundreds of thousands of patients. Clearly social media is not a replacement for an office or telehealth visit, but as a method to provide information, it is an excellent auxiliary.

Younger patients have a different relationship with their physicians. The days of not questioning and just going along have been replaced by a time when patients want to know more and to better understand their disease and treatment options. Social media enables physicians to provide the information their patients’ desire.

Online Information & Misinformation

There is a huge quantity of cancer information available online. For example, patients can easily find online examples of herbs and supplements that claim to reduce the chance of cancer by 80 percent. Some videos can have 20 million viewers who see that message.

A social media post can explain that medicines derived from such natural sources as the yew tree, the Japanese sponge, or a Chinese plant, subjected to rigorous Food and Drug Administration (FDA) scrutiny during the approval process, bear no resemblance to the untested and unverified claims of wondrous herbs and supplements. Social media provides a platform to crack the misinformation barrier and globally break down resistance to modern medical care.

Who Can Social Media Reach?

Many people seeking online information are patients or caregivers themselves or only one or two degrees of separation from someone with cancer. Another segment effectively reached by social media are secondary or tertiary providers, like chemotherapy nurses, nurse practitioners, physician assistants, and physicians from specialties other than oncology.

In oncology and other specialties, advanced practice providers are an important part of the care team. Social media helps explain the importance of these practitioners and how collaborative the care process is. By providing updates of advancements in cancer care, these support personnel can maximize their contribution and aid in reaching a cancer diagnosis.

Recent developments in the treatment of non-small cell lung cancer provide an example of the social media contribution. Many providers who are not oncologists are not aware that computed tomography (CT) scans can be a screening modality. Additionally, many patients with a KRAS mutation were thought to be untreatable, not a chemotherapy candidate, and were often placed on palliative care. Within the last few weeks, it has been determined that these patients may be treated with chemotherapy and should have further diagnosis to investigate if chemotherapy is now a treatment option.

As cancer treatment evolves, social media can quickly bring this information to providers and the public. Dr. Juneja will be creating a video for social media so that those who are unaware of this change can quickly be made aware. He has already seen examples of hospitalists who learn of cancer treatment breakthroughs via social media, discuss what they have seen with a patient’s oncologist, leading to a new treatment option being made available to that patient.

How to Get Started Using Social Media

Dr. Juneja was able to grow to his current almost half million followers by observing the traction he got on non-oncology related videos. He felt a responsibility to use that traction to be a vessel to push out oncology information. He used what he knows best so information could flow through him to the public and fellow providers. This can be achieved by any dedicated user of social media. Providing information must always be the paramount objective. Dr. Juneja has made a personal pledge that if amassing followers ever supersedes providing information, he will step back from social media as this tool is too valuable to be compromised by vanity.

Which Social Media Platform is Best?

Different platforms meet different social media needs. Doctorpedia is a health media network of condition specific medical websites delivering credible and engaging video and written content powered by real doctors. The Doctorpedia’s website contains a patient guide that allows users to quickly and easily navigate through the website to find needed information. This site can be an excellent companion to an office visit by reducing the amount of time needed to educate a patient and/or family member(s) so that there is more time to bring the discussion to the individual level. The educational materials can also be given to patients and family members to have a more qualitative appointment.

The less formal forum of social media is not as imposing to patients and allows them to see the physician as more relatable. Blanket suspicion of health care providers is easier the more distant a physician may seem. Patients find it easier to trust physicians when there is greater relatability, and conversely, easier not to trust when there is a distance.

A categorization of the social media platforms commonly used by physicians reveals:

  • TikTok is most often the platform for lighter content.
  • Instagram tends to have more personal information.
  • YouTube commonly features 7-to-10-minute educational information directed towards both professionals and lay people.
  • Doctorpedia offers educational content for both patients and physicians.

Regardless of the platform, some physicians provide bonafide medical content, as well as opinion. Others stay away from opinion because they feel it can muddle the message.

Social Media Cautions

Without a tough skin, venturing into social media can be difficult. It is important to remember that anything posted to any social media platform should be presumed to live forever. If core values are correct, and the speaker has authenticity, social media is a powerful tool. Social media — when used correctly and strategically over time — is a very powerful form of marketing; but it is not a magic bean that grows overnight into business success. It’s a platform for real, regular, and thoughtful work.