Week 5!

I would like to start this post with a list of what we have to accomplish in the next 5 weeks. We composed this list with our mentor, Patrick, at our meeting last Friday.

The text in red has been completed this past week.

The text in blue we aim to complete by next week.


*File IRB*

-review SQL
write simple SQL calls in PHP/experiment with the data base
Pull all relevant Facebook data into database
-Experiment with Matching
-Operational App (functional but not pretty yet)
Criteria Table (to help build a scenario)
create scenarios (look at scenario-based paper that was sent) How many scenarios should we have? Probably 3-5
finish mockup based on these scenarios (how would someone in a certain scenario use this application?)
– make survey (demographics, current practices (how do they get their support now and what is beneficial? How do they currently do things and is this challenging? Perception to the scenarios) make answers likert scale or open-ended
– recruit participants for data collection (looking for about 20 – 30 responses (if difficult may continue for the next week)
-preliminary analysis and reiterate (do we need to change anything or redeploy?)
-last weeks write-up our findings/analysis and go back and go over related works/method
Although at the end of this 10 weeks our app needs to be functional, it does not have to be completely camera-ready, as when approved by IRB we hope to deploy an actual user study with the finalized application. To give others an idea of what our overall web-based application will look like, here is an example of an online health community: https://www.patientslikeme.com/
Our idea is similar, but we hope to cater more towards those who are even less represented – the rare disease population. Also, to aid in the addition of more support, we will be implementing a matching algorithm. Much like the homophily theory states, those more similar are more likely to have relationships. Our algorithm (like those found in dating websites), will match those similar disease-wise, age-wise, and so on. We think that providing those with rare diseases with a source of support that knows the exact situation they’re dealing with will increase the amount of support an individual receives.
I hope that by the end of the summer I will create my own website with coding it myself, but for now here is my professional website:

By the end of this program, our goal is to be able to publish in CHI ’17. By that time, we may have multiple papers if we get to also deploy our finalized app into an actual rare disease population. Another paper I am working on with Haley MacLeod, “Be Grateful You Don’t Have a Real Disease”: Understanding Rare Disease Relationships, will also be submitted to the conference. Here is more information on CHI! https://chi2017.acm.org/

Here’s the most current version of our paper here: Facebook_Extension_Project

After reading a few scenario-evaluation based papers, I feel that our paper may need to be set up a different way. With that in mind, it is definitely a question to ask while we continue revising our paper.
I am glad to say that after generating a big TO-DO list in our meeting, I feel a ton better about our project. We are continuing to work hard as ever to complete our final deliverables!
See you next week!