Social Media and Cancer Patients - Benefits and Privacy Issues

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Why Share Your Cancer Journey on Social Media?

To share or not to share... istockphoto.com/Stock 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 treatments 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 recent 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? Read on.

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Benefits and Risks of Sharing Personal Health Information Online

Weigh the risks and benefits of sharing your health information online. istockphoto.com/Stock photo©styf22

 Before deciding whether or not to share information online, it may help to look at the benefits vs the risks.

Possible Benefits

  • 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.
  • Another benefit of sharing information online is emotional support. For example, I've heard from many people in the lung cancer community that one of their greatest sources of support are the "friends" they have met online who are similarly coping with lung cancer.

Possible Risks

  • 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 an awareness that future employers may have access to this information should be kept in mind.
  • Personal risk.  For starters, picture who may be reading your information. If you write about your stay in the hospital, it essentially advertises that you are not at your home.
  • 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.

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Use Privacy Settings - Choose Your Audience

Choose privacy settings for your social media connections. istockphoto.com

 Before sharing your personal health information on social media, 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?) Check out this facebook privacy settings tutorial.     

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Decide Ahead of Time How Much You Will Share

istockphoto.com/Stock 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 3 categories:

  • Your clinical information - Such as your symptoms, your diagnosis, your treatments, and your symptoms and outcome.
  • Your daily life - How much information are you comfortable sharing about your day-to-day activities and relationships?
  • Your identity - This includes information such as your email address, photo's taken of you, and your phone number.

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Choose Where You Will Share Information

Where will you share you personal health information online?. istockphoto.com

 What media outlets do you wish to use to share your information. Some places people share their cancer journeys include:

Another (and perhaps more private) options, is one of the cancer communities. These usually require that you have a free membership.

For sharing with family and friends, many people choose to use a personal site such as Caring Bridge:

Sources:

Frosti, J., Vermeulen, I., and N. Beekers. Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities. Journal of Medical Internet Research. 2014. 16(5):e126.

Grajales, F. et al. Social Networking Sites and the Continuously Learning Health Systems: A Survey. Institute of Medicine of the National Academies. 02/04/14. http://www.iom.edu/Global/Perspectives/2014/~/media/Files/Perspectives-Files/2014/Discussion-Papers/VSRT-PatientDataSharing.pdf

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