As a fast growing online patient support community with 5700+ members, my Facebook group “Living with an ICD” is attracting the attention of researchers. More and more, they discover the potential of social media to reach patients for medical studies.

Unfortunately, most attempts to place research calls in online support groups are clueless and clumsy. For instance, posting calls directly for research participation without asking the administrator(s) first is not welcome in many groups.

I delete respective posts in my community.

If you are a researcher and you consider to use the resources of online patient communities for your study, this is how you will succeed most likely:

  1. Contact the admin(s) and ask for permission to post your promotion in the group
  2. Describe your project precisely and include eligibility in your message to the admin(s) and in the post
  3. Point out that you are working for a respectable university/institution/organization
  4. Offer to share your findings and recommendations with the admin(s) or the group later on

Note from SADS Channel administrators:  The SADS Foundation supports research by serving as the critical link between patients, healthcare providers, and researchers.   Read about our role in research and our research policy here.
If you are a leader of an online community that serves the SADS population and we can be of assistance, don’t hesitate to contact us.