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Hello — you might have landed here because you have seen me talk, participated in one of my classes or you might have been pointed here by someone else.

Background

I have had Crohn’s disease for over half of my life. And although I support awareness building and sharing information from medical research through to recipes, there has emerged new challenges for our digital identities as information technologies have become embedded into our day-to-day lives.

Social media networks have brought us fantastic opportunities to share knowledge and experiences in solidarity. These services are often free which means that we are paying with our personal data instead. What does this mean when we share information about our health in these spaces?

Method

All about making meaningful relationships, I would like to hear directly from you. And I would like you to speak to one another about these challenges in an aysnchronous closed environment. Together we can  foster a safe space to talk about the environments we make ourselves vulnerable to.

Goals

I hope that this research will bring light to how the IBD community use different social networks and what risks we perceive when sharing health informations on these platforms. I would like to take this research to platform providers and get your thoughts heard.

Code of Ethics

  1. Your health and wellbeing is my top priority.
  2. First and foremost I am a Crohnie and I'm happy to talk about that off the record.
  3. I will do my upmost best to help you protect your privacy.
  4. I will only collect your data for my research with fully informed consent and I will keep it safe.

How can you get involved?

Over the next couple of years I will be working on different 'waves' of conversations to talk about our relationships with social networks. To be involved with the research you can do the following:

  • You can express your interest in participating in any upcoming conversation by emailing, tweeting or commenting below.
  • You can share articles, papers or knowledge with me that might help support and shape the projects.
  • You can share this page with someone who you think might benefit from my work.
  • You can let someone with IBD know that there are others out there to speak with over privacy-enabling channels.

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