Week 8 Update

This week was a very successful week. I’m glad to start seeing our hard work pay off!

Last Friday at the Pro-Health Tea, Vanessa and I delivered a lightning talk on our project. I think we presented pretty well based on the goals we set. Sadly, time ran out when I was saying my last thought. It was a bummer, but not too upset about it as my goal was to speak slower while presenting. Guess I spoke a little too slow! Here is some tips I followed to complete our lightning talk:


  • Get to the point quickly; invest no more than ¼ of your time on setup and background
  • Tell a story
  • Show passion
  • Share information
  • Use more pictures and fewer words
  • Audience is on your side
  • Delivery is more important than content

Here is our script for the final lightning talk:

Although considered rare, roughly 300 million people worldwide suffer from a rare disease. To put this in perspective, if everyone with a rare disease lived in the same country, it would be the world’s third most populous nation.  Compared to the large amount of people affected by a rare disease, the amount of awareness and information regarding rare diseases is very slim. In the study “Rare Disease Facebook Extension: Creating a Supportive Online Community for the Rare Disease Population “ we conducted a scenario based survey in order to really get the understanding of what this population would like to see in an online support community.

The survey has presented the HCI community with insights of what features and elements should be considered when trying to create an online community for the rare disease population. These insights will later be used to effectively develop a web-based application through Facebook. This will help eliminate some of the challenges this community faces when seeking information and support. We propose that the addition of a social-matching algorithm would be beneficial for this application, along with specific features identified as useful by the participants.

Monday, we began our day by teaching the Girl Scout camp how to create paper circuits. I feel like the best way to know something is to be able to talk about it and teach it to other people, so now that I’ve taught paper circuits a few times I feel like a pro. 🙂 On another note, it was crazy how smart some of these girls were. I really like how they were getting involved with technology at such a young age; I feel this is important, especially as tech and computers are often seen as a “guy thing” and more and more women should feel empowered to join into the tech field. Yay for girls in technology! After that workshop, Vanessa and I worked on our paper before we submitted it for peer review at 5PM. It’s crazy how every time I read through it I feel the need to make another edit! You really do have to keep iterating your paper as you do research. Documentation is key! We went into our paper and corrected some mistakes in the abstract and introduction, as well as added more applicable CHI citations to our related works and better set up our discussion and future works section. That way, as we start getting results this weekend into next week, we can just plop the data into our paper and begin analyzing. So far, I think it sounds great! Here is a current version of our paper: 2017CHI_BastinPereira_RareDiseaseFacebookApp (3)

Tuesday, we devoted most of the day on making our poster. We decided that a few things were key when developing our poster: 1) We had to emphasize why we were wanting to develop something for the rare disease population; 2) We had to include the purpose of our study – which is collecting input from the rare disease population to better formulate mechanisms for an application; and 3) We thought it would be best to include the 3 scenarios we evaluated participants on. I really like how our draft came out. View it for yourself here:  RareDiseaseREUPoster.

Wednesday, we first had a meeting with Fernando at 11am. We showed him our poster draft, and he gave us suggestions referring to the wordiness of the scenarios. We managed to shorten the length of the text down just before we submitted our poster. We also spent this time combing through our survey and making sure all corrections were made. After making these corrections, we sent the survey to Patrick for the final edits. During our workshop, we presented our poster draft and received a lot of great feedback from our peers. I loved seeing everyone’s posters as well. Once we received the feedback, Vanessa and I created a criteria table for our poster in order to address what was important to include on the poster as well as what changes needed to be made.

Thursday was our easy day! While waiting for Patrick to give us feedback on our survey, we spent our time helping out our mentor Fernando with one of his projects. Our job was to memorize four supportive messages and say them into a video camera while acting out the messages. Always great to build connections and help others! And in turn, we received $10 Amazon gift cards which is a huge plus!! We also used this time to write our peer reviews for the assigned student we were each given.

Friday we met with Patrick and Fernando to finally give an OK on our survey to distribute it this weekend. To see our final survey, click here http://tiny.cc/rarediseasesurvey (PLEASE DO NOT FILL OUT AS THIS IS FOR THE RARE DISEASE POPULATION ONLY) Special thanks to Haley MacLeod for helping us with distributing our survey to other rare disease support groups.

Over the weekend, we hope to receive responses from our surveys and begin analyzing our data. We first distributed the survey to a rare disease community of 13 members. Our survey, which has multiple short answer questions, will be later refined to a shorter multiple choice survey based on the responses we obtain from the smaller group. That way, when we make a shorter survey we can release it to bigger rare disease groups and hopefully get more feedback about what would facilitate better support in the rare disease community.

Cheers to the weekend!