In the very likely event that I don’t make myself clear in my ignite at DML ……..
Today I talked about the Inflammatory Bowel Disease community, in which there is a culmination of people from different backgrounds who live on a day-to-day basis with Crohn’s or Ulcerative Colitis. It’s not considered a ‘rare’ disease, but certainly uncommon enough that it isn’t very likely you meet people face-to-face with the condition.
The affordances of social media networks means that people can come together in solidarity and empathy to share their stories and learn from one another. There is no one treatment and we are often experimenting with a cocktail of medicine to try to get into remission. All of our stories are unique.
But I ask what might the consequences be of sharing this information in spaces that although feel private and safe, aren’t designed to necessarily protect a person’s privacy? What might the consequence of sharing intimate data about someone’s health mean to a pharmaceutical company or a health insurer? Is this data sharing being informedly consented to?
And so, I have come to learn that we cannot predict what the outcomes might be as the algorithms in place and data sharing practices are extremely opaque. However, we can start to bridge people’s understanding of the digital economy and start to allow others to feel empowered to make informed decisions about their data sharing and its associated risks.
I have just started my PhD at the University of Nottingham where I will be looking at different interventions that might help move people from a position is misperceived privacy to a position of agency to make these decisions consciously. I don’t believe in doing this alone and I am very much in the spirit of co-learning with you.
If you would like to be a participant in my research, have some thoughtful comments or feedback then please get in touch. Further still, if you have any connections with anyone else with IBD then please speak with them about my project and let them know that my door is open.
kate [at] kateoleary.net // @kategreen28
And here’s the Ignite: