Dr. Ann Meredith Garcia Trinidad earned her medical degree and master’s degree from the University of the Philippines and pursued her residency and fellowship training at the UP-Philippine General Hospital. She is currently the Head of the Section of Medical Oncology at the Dagupan Doctors Villaflor Memorial Hospital. She is a board-certified medical oncologist with a special interest in health care social media. Her Facebook page dedicated to raising cancer awareness among Filipinos has over 110,000 followers. You can follow her on Twitter.

People with cancer and caregivers are increasingly turning to the internet as an important source of information and support. Social media platforms have been very particularly useful in connecting people living with cancer from all over the world. Through these online communities, people with cancer and their caregivers are given the opportunity to find others going through similar real-world experiences. These connections allow them to exchange information and seek emotional support. They also have the potential to help widen their perspectives about their diagnosis, treatment, and prognosis.

According to a Healthline-commissioned survey, more than 80% of the respondents agreed that online cancer support groups and forums have had a positive impact on their cancer experience, especially in terms of providing emotional support and making informed treatment decisions. Overall, social networking has become an important tool that allows people with cancer and their loved ones to empower themselves and lift each other up.

But as with any other form of technology, social media platforms also carry certain risks. They can lead to information overload, for example, and may offer harmful or incorrect advice. They can reinforce some negative health behaviors, too. Furthermore, users may not be sure that their privacy and confidentiality are being protected. Because of these risks, it’s crucial to be very careful when navigating the vast web of online patient communities. 

Here are some tips on the best ways to use social media for support throughout your cancer experience.

1: Set your goals and preferences.

Identify the specific areas that you want to explore. Are you looking for health information, peer support, or caregiver advice? There are different formats of social networking among virtual patient communities, and you can select those that match your preferences. Stick to 3 to 5 online resources that cater to your specific needs so you can avoid information overload.

2: Start by following established and trusted online patient support resources.

Ask your cancer care team for recommendations of trustworthy sources of information. You can then expand your social network by checking and following connected individuals and organizations with similar interests to yours. Learn more about finding online communities for support.

3: Evaluate online communities before participating in them.

Not all virtual groups out there are helpful, such as those that support pseudoscience. Check the motivation behind the group you’re considering joining and how relevant and helpful the information being exchanged is to you. Steer clear of groups that allow sharing of unproven advice and advertising for medicinal products. You should also be careful of scams to take your money.

4: Learn some of the popular health care hashtags.

Hashtags have been created to make it easier to find related information on social media. For example, the hashtags #lungcancer and #lcsm (lung cancer social media) can lead you to other people with lung cancer and conversations revolving around the topic. In the same way, using relevant disease-specific hashtags can also be a great way for other people to find you and engage with you. Find a list of cancer hashtags on a separate website.

5: Participate in the conversation.

Connecting with other people with cancer and caregivers who are going through the same experiences as you can provide comfort and reassurance. Listen at first to get a feel of what you are participating in. Then, if you have something to contribute, feel free to join in and enrich the conversation. This is a great way to pay it forward and be advocates for each other.

6: Check your privacy filters.

Your virtual profile and most of what you post online, especially on social networking sites or online forums, has the potential to be publicly visible depending on the platform’s privacy policy and your own privacy settings. Because of this, it’s important to be careful about setting your privacy filters and to only post information that you are comfortable with sharing publicly. It is completely up to you to decide how much information you want to put out there. However, when discussing personal details or other sensitive information, it is better to choose direct or private messaging.

7: Avoid toxic or harmful environments.

Some online communities do not have a moderator or are not being moderated well, which makes it easy for harmful information and negative advice to circulate. Disruptive group members may try to impose unhelpful beliefs on others. There can also be times when upsetting or depressing news dominates the conversation. All of this can take a toll on the mental health of other group members. Do not engage in competitive comparisons about who has it worse, and recognize when it is time to leave a group.

8: Online support is not a substitute for in-person human interaction.

While these virtual engagements are helpful for many people with cancer, especially for those who prefer privacy or anonymity, they should not lead to social isolation from your loved ones. Be sure to still prioritize seeing your friends and family in person and having meaningful in-person interactions when it is safe to do so. In-person interactions may not be possible during the COVID-19 pandemic, but there are other ways to stay connected to your support system. Learn more about what people with cancer should know during the COVID-19 pandemic.

9: Talk to your cancer care team about the information you come across before acting on it.

Remember that not everything you find online is true or accurate. Even if other people with cancer mean well in what they share, what is right for one person might not be right for you, even if you are in a very similar situation. Let your health care team help you make sense of these bits of information and determine what can be useful for you. Remember that online health information cannot replace the personalized medical care you get from your health care team, and it is important to continue communicating with them every step of the way.