Citizen Scientist

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  Citizen Scientist

Inspiration

There is a great need to connect patients with clinical trials, but most patients don't have a strong motivation to seek out trials, and the threshold for this motivation is even harder to meet due to patients not being aware of trials existing. I am inspired by the idea that knowledge itself is a powerful determinant of health.

What it does

Ideally, it democratizes medical research, disseminates actionable medical information to people outside of the field, and connects Citizen Scientists with their future collaborators. This web app allows users to make an account, enter in health information, and to become part of the grand enterprise of medical research. Their information will be used to create a curated feed of actionable and simplified medical information for their personal benefit. Clinical research interests can pay Citizen Scientist to survey users or subsets and patient populations using the app, and patients can voluntarily on a case-by-case basis participate in paid surveys. Additionally, their information will connect them with relevant clinical trials, and provide them with multiple routes to make money as Citizen Scientists. Most importantly, they do so on their own terms and in the tradition of medical research; selectively consenting to any and all transactions and uses of their information, and personally benefitting from this relationship. If "users are going to be the product" in the world of big data, then it is only the ethical result that they may choose when and how that transaction occurs.

Regarding clinical validity, patients can achieve verified account status by bringing their account url to their primary care provider or free clinic care provider, who will then be able to sign off on the veracity of the information they have entered in the account. Providers can become verified users by simply being certified in public records. Because this increases the value of users' data, they will be paid more for their data. Plus, a verified account can serve as a portable record of health that the patient would have ownership of, and control over.

How I built it

Though we believe strongly in the idea, our team contained mostly people who had little to no coding or web-development experience, so we used the opportunity to learn. We therefore created a sufficiently explanatory iteration of the web app by creating a domain and hosting it on github, manually creating the web page in html, and using github for version control. We also used powerpoint and other tools we are more familiar with to help convey the project.

Challenges I ran into

Learning some of the nuances of git is a challenge, even for seasoned users. We each had unique errors in initializing our repositories and connecting them to github, but once we resolved them things went smoother. Additionally, all of us were coding in a language that was new to us, so it was obviously an uphill march throughout.

Accomplishments that I'm proud of

I think that the team did a great job of collaborating to tackle the prompt. I think we have a very good answer to the question of how to increase patient's participation in their own health, to increase volunteering for clinical trials, and to democratize and disambiguate medical knowledge. Additionally, I was proud of the first time that the logo came up on the website, when the different pages of our web app routed together correctly, and when the buttons worked. I also consider it an accomplishment to have had relative success collaborating on a project using github, which is an essential and standard technology in the world of open-source development.

What I learned

PUSH TO GIT IF YOU ARE ACTIVELY COLLABORATING

What's next for Citizen Scientist

Citizen Scientist serves the need to rationally incentivize patient's ownership of their own care, but I believe that the concept of the "Citizen Scientist" has much further to go. The idea could be applied to social sciences in a way that respects user autonomy. It allows for the cultivation of identity around inquiry and self-sufficiency, and it could provide a glimpse of what the future of crowd-sourced science may look like. It is a vision fundamentally different from that of the Facebooks and the Amazons of the world, where people are the product and their data is abused and sold without their explicit consent. It is a vision of affirmative consent for being included in data experiments, autonomy, and could point us to a small part of what a universal basic income would look like in the future.

Built With

• django
• html