Safety and Privacy In Online Cancer Communities

How to safely share your cancer information on the Internet

Sharing your personal cancer information in online cancer support communities or via social media can have many benefits, but it's important to consider safety issues and how to protect your privacy before you begin to type. If you opt for private groups or friends only on social media, it's important to make sure that your information doesn't go further. If, instead, you don't use privacy settings, it's important to consider who may be looking at your information from many angles.

We will take a look at the risks and benefits of sharing, how to choose your audience (and keep out those who you don't want listening), and then figuring out exactly how much and where you wish to share.


Sharing Your Cancer Journey on Social Media

poster with social media and cancer
To share or not to share... photo©rafal_olechowski

There are many reasons people with cancer may wish to share their personal information online. Some people share information about their diagnosis so that others can offer opinions about doctors to see, treatments to consider, and provide further information. For many people, social media offers emotional support during the cancer journey. Yet other people hope that in offering their own information, they can help others who are facing cancer.

People Want to Share But Worry Just the Same

A 2014 survey found that 94 percent of people would be willing to share their personal health information in order to help others. At the same time, 74 percent of these people were worried that the health information they share could be used in detrimental ways.

How can you share your information in order to receive the best support and information for yourself and help others, while protecting your privacy at the same time?


Benefits and Risks of Sharing Personal Health Information Online

Weigh the risks and benefits of sharing your health information online. photo©styf22

The first step before sharing personal information of any kind online is to weight the benefits vs. the risks.

Possible Benefits

Many survivors claim that sharing information about their cancer journey online has not only brought support, but introduced them to a whole new family. some benefits include:

  • Access to information or opinions that would not be possible if you did not share your information. For example, if you have ALK-positive lung cancer (a type of lung adenocarcinoma found in roughly 3 percent to 5 percent of people with lung cancer) and share that information online, you may be better able to connect with other people with this type of mutation, and learn more about approved treatments as well as clinical trials.
  • Emotional support. For example, we've heard from many people in the lung cancer community that one of their greatest sources of support has been the "friends" they have online; people who "get it" because they are similarly coping with lung cancer.
Possible Risks

There are also risks associated with putting personal information "out there." some of these include:

  • Employment risk. There is a risk that information you share online could be seen by potential employers and be used in making a "decision" for or against hiring you in the future. While your diagnosis alone cannot be used to discriminate against you in this way, we all know that there is a subjective component to hiring, and being aware that future employers may have access to this information should be kept in mind. Even if you delete information you have previously shared, the not-for-profit organization Cancer and Careers reminds people that information can often be recovered. In other words, "Facebook is forever."
  • Personal risk. To get an idea about the personal risk associated with sharing personal information online, picture who may be reading your information and what they may do with what they learn. If you write about your stay in the hospital, it essentially advertises that you are not at your home.The same thing is true if you post an image while attending a conference out of town or vacationing.
  • Insurance risk. Keep in mind that potential insurers in your future may have access to your information. While pre-existing conditions are less of a problem now than in the past, there are other issues to consider. Before writing about alternative treatments you use, and especially if you choose to go against medical advice in any way, think about who else may be reading the information you provide.

Use Privacy Settings to Choose Your Audience

Choose privacy settings for your social media connections.

Before sharing your personal health information on social media, carefully check out your privacy settings. Who do you wish to have see your information? Are there people that should not see this information (think future employers, for example)? Privacy issues vary between different social media sites, and it's important to read the fine print.

On sites such as Facebook, you can choose different privacy settings for different posts, so that only certain people or certain friends can read them. There are also different levels of privacy associated with Facebook groups.

Some groups allow anyone to read any of the posts or comments. Anyone can read anything you share or comment on, and comments you make may show up in the feeds of people you have as friends.

Some groups are closed so that you comments are safe from eyes that shouldn't see them, but may still allow "outsiders" to see who belongs to the group. To join these groups, an administrator often asks questions to make sure you are a good fit. That said, anyone can write whatever they wish in response, and non-cancer survivors who are stalkers have sometimes been inadvertently accepted to such groups.

Private groups offer the most privacy, and since they can be joined only by invitation, are usually invisible to people outside of the group.

It's important to note that even if a group is private, and even if you know each member, HIPAA rules don't apply once you share your information. Take a moment to consider any potential concerns should another member repeat your story to someone outside of the group.


Decide Ahead of Time How Much You Will Share photo©monkeybusinessimages

Before you write a word, consider what information you are comfortable sharing on social media. It may help to break this down into three categories.

Your Clinical Information

This may include information about your symptoms, your diagnosis, your treatments, your side effects, the oncologists and other health care providers you see, and more.

Your Daily Life

Consider how much information you are comfortable sharing about you day-to-day activities and relationships with other people.

Your Identity

This includes information such as your name, your location, your email address, your phone number, photo's you have taken or others have taken of you, and more. In general, contact information such as phone numbers and email addresses should not be listed, and could later be privately messaged to a specific individual if you wish. Many people use their real name, but if there are any concerns about employment issues (or more) related to having an online presence, some have used aliases when sharing cancer information.


Choose Where You Will Share Information

Where will you share you personal health information online?.

The next choice is deciding where to share your information. Some places people share their cancer journeys include:

Another (and perhaps more private) option is one of the cancer communities. These usually require that you have a free membership. Again it is important to understand the privacy policy as the sites may differ.

For sharing with family and friends, many people choose to use a personal site such as Caring Bridge. Even with sites like this, however, you have the option of deciding who will see your site. An email is required to visit a site, but this alone does not ensure safety as someone with poor intentions could easily adopt a free (and untraceable) email simply to observe someone's posts. Depending on the level of privacy you wish to have, three are three levels of privacy you can choose, including that by invitation only.

A Word From Verywell

Sharing your cancer journey in cancer support communities and via social media can be a great way to connect with others facing similar challenges, receive support, and garner information. There are also risks associated with placing your personal information in cyberspace. Learning about privacy settings and making careful and deliberate choices about what you intend to share and where you will share it can help you obtain the benefits while minimizing the risks.

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