Incorporating Social Media into your Support Tool Box: Points to Consider from Genetics-Based Communities

Abstract

Patients with newly-described or rare genetic findings are turning to social media to find and connect with others. Blogs, Facebook groups, and Twitter have all been reported as tools for patients to connect with one another. However, the preferences for social media use and privacy among patients, their families, and these communities have not been well characterized. To explore preferences about privacy and membership guidelines, an online survey was administered to two web-based patient registries, Simons Variation in Individuals Project (www.simonsvipconnect.org) and GenomeConnect (www.genomeconnect.org). Over a three-month period, invitations were sent to 2524 individuals and 103 responses (4%) were received and analyzed. Responses indicate that Facebook is the most popular resource accessed within this sample population (99%). Participants used social media to look for information about their diagnosis or test results (83%), read posts from rare disease groups or organizations (73%), participate in conversations about their diagnosis (67%), and connect with others to find support (58%). Focusing on privacy issues in social media, respondents indicate that membership and access impact the level of comfort in sharing personal or medical information. Nearly 60% of respondents felt uncomfortable sharing photos or medical information within a public Facebook group, whereas only 12% of respondents felt uncomfortable sharing in private group targeted to families alone. Using this preliminary data concerning social media use and privacy, we developed points for genetic counselors to incorporate when discussing available support resources for patients with a new, or rare, genetic diagnosis or genetic test result. Genetic counselors are trained to provide anticipatory guidance to families adapting to new genetic information, and are well-equipped to help patients consider their preferences about using social media as a source of information and support.

Appendix 1

• 1. Have you, or someone in your family, had genetic testing?

  • a. Yes, I have had genetic testing

  • b. Yes, a family member has had genetic testing

  • c. No

• 2. Do you, or does someone in your family, have a genetic diagnosis?

  • a. Yes, I have a genetic diagnosis

  • b. Yes, a family member has a diagnosis

  • c. No

• 3. Do you use Facebook or other social media?

  • a. Yes

  • b. No

• 4. Are you aware that there are rare disease groups on Facebook?

  • a. Yes

  • b. No

• 5. Check social media outlets that you use (select all that apply)

  • a. Facebook

  • b. Pinterest

  • c. YouTube

  • d. Twitter

  • e. Instagram

  • f. Reddit

  • g. SnapChat

  • h. Blogs

  • i. Other (please specify)

• 6. Have you ever used social media for any of the following purposes? (select all that apply)

  • a. I read posts from a rare disease group or organization without making any posts myself

  • b. I participate in conversations about my/my child’s diagnosis in a Facebook group

  • c. I look for new information about my/my child’s diagnosis

  • d. I connect with other families and find support through a group

  • e. I keep my friends and family up-to-date about my/my child’s diagnosis

  • f. I share my experience about genetic testing or about my/my child’s diagnosis

  • g. Other (please specify)

• 7. If you participate in any CLOSED Facebook groups, rank how important it is that the group is moderated by a clinician, expert, or professional: (Note: closed groups are Facebook groups that you must request and be approved to join)

  • a. Not at all important

  • b. A little important

  • c. Undecided or Neutral

  • d. Somewhat important

  • e. Very important

• 8. Would you be more or less likely to join a support community through Facebook if it was OPEN to researchers?

  • a. I would be more likely to join a group if the group was open to researchers

  • b. I would be less likely to join a group if the group was open to researchers

  • c. Whether a group is open to researchers does not affect my decision

• 9. Rank your level of comfort with sharing medical questions, photos, and other personal information on Facebook or other social media.

  • a. Very uncomfortable

  • b. A little uncomfortable

  • c. Undecided or neutral

  • d. Somewhat comfortable

  • e. Very comfortable

• 10. Rank your level of comfort with sharing medical questions, photos, and other personal information on Facebook or other social media.

  • a. Personal Safety

    • i. Not concerned at all

    • ii. A little concerned

    • iii. Neutral

    • iv. Somewhat concerned

    • v. Extremely concerned

  • b. Data Security

    • i. Not concerned at all

    • ii. A little concerned

    • iii. Neutral

    • iv. Somewhat concerned

    • v. Extremely concerned

• 11. Do you have any thoughts, comments, or concerns to share with us about your use of social media, as it relates to a genetic diagnosis or genetic testing experience?

  • a. Free text response

• 12. Do you have any suggestions for rare disease groups on Facebook?

  • a. Free text response

• 13. If you do not use social media, please explain why.

  • a. Free text response

• 14. Are you registered with any patient registries? (please select any that apply)

  • a. GenomeConnect

  • b. Simons VIP Connect

  • c. Unique

  • d. Unsure

  • e. Prefer Not To Answer

  • f. Other