ELLIE LIN
Transparent Health Coalition
Using federal data to build an application that will empower consumers (patients) through knowledge of privacy and security.
Project Context
Overview
This project was a 16-week innovation sprint for the Opportunity Project (TOP) 2023, led by the US Census Bureau and FDA, to help solve and improve patient privacy and security data sharing problems within and between institutions and individuals.
TEAM
Ellie Lin (UX Designer)
Sheena F. (Product Owner)
Itohan O (UX Researcher)
Sariane L (User Advocate)
Sallma J (User Advocate)
MY RESPONSIBILITY
- Competitive Analysis
- Information Architecture
- Design Web Pages
- Mobile Design
TOOLS
Figma
Miro
Adobe Illustrator
DURATION
4 month
The Problem
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New care delivery methods rely on patients to input their health data in order to provide a complete picture of individual and patient population health.
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Patients and consumers have questions and concerns regarding the safety, security, and utility of sharing their health information due to low trust and transparency.
Patient Concerns
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Why is my data health so important and why should I share it?
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What is my health data being used for?
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Is it safe to share my health data?
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Is my health data secure when I share it?
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Who is sharing and using my data and when?
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How does sharing my data benefit me and others like me?
End goals
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Empower patients
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Establish a resource tool kit for patients to take action
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Create a data sharing and design framework for companies to adopt into their platforms
Our Solution
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Focus on one health concern per campaign for relatability.
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Communicate with an interactive, user-friendly interface how health data is collected, stored, and shared.
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Explain tacitly how data can be safely and transparently used to improve care and advance treatments important to the identified patient population.
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Demonstrate how patient and consumer data is used.
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Partner with digital health companies, providing them with a “Transparency & Design” API tool to have a standardized way to share how user health data from their platform was collected used and shared.
Process
WEEK 1
ONBOARDING
WEEK 2-4
DISCOVER
WEEK 5-6
Concept Pitch
WEEK 7-10
DESIGN
WEEK 11-14
MVP DESIGN
WEEK 20
SHOWCASE
Sprint kickoff
Workflow
User Research
User Interview
Data Exploration
Present the Initial Concept product
Beta Demo
Ideation
Final Design
Iteration
Refinement & Finalization
Product launch at a public-facing, open-press event
Discovery
In the initial weeks of this sprint, we conducted a thorough review of CDC data and engaged in discussions with our user advocates from the FDA team. This allowed us to gain valuable insights and better understand their concerns and frustrations regarding the sharing of their personal health data.
Key Findings from the FDA User Advocate Interviews
#1. LIMITED RESOURCE ACCESSIBILITY
Users value the convenience of readily available resources, such as newsletters, email notifications, or in-app blogs.
#2. LACK OF PERSONALIZATION OPTIONS
Users expect the ability to customize their experience, including the choice to opt in or out of certain features and give their consent.
#3. TRANSPARENCY DEFICIENCY
Users seek clear information about with whom, why, when, and how their data is shared, as well as what will be done with it in the future.
Comparative Analysis
We conducted a comprehensive review by examining prominent data service websites, including federal data applications. Our objective was to understand their data-sharing approaches and identify potential features we could incorporate into our platform while determining opportunities for differentiation.
In-Depth Research Collaboration with FDA/CDC
We started the process of identifying the data we would use and commenced data reviews with data stewards representing federal open datasets.
6.3%
higher maternal death rate among black women compared to white women in the U.S.
– CDC, maternal mortality 2021
6.8%
higher maternal death rate among women aged 40 and older compared to women aged 25 and younger
– CDC, maternal mortality 2021
72%
of surveyed women used pregnancy apps during their pregnancy
– Nature
Take one step at a time
After conducting a thorough review of federal open data and performing a comparative analysis with several prominent data science websites, we have made the decision to refine our focus to maternal telehealth. This choice is driven by the observation that there is limited availability of digital applications prioritizing data sharing privacy. Our mission is to proceed incrementally, taking one step at a time to address this crucial issue in maternal healthcare.
Target Audience
Customers/Partners
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Federal health agencies
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State health agencies
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City health departments
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Hospital/health systems
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Insurance providers
End-Users
Customers/Partners
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Patients with various health and medical conditions
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Patients/individuals impacted by public health policy or crisis
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Consumers of digital health and wellness tools.
Design
Logo
The design of the logo draws inspiration from the concept of building blocks and puzzle pieces, symbolizing the interconnectedness of healthcare providers, patients, data, and various healthcare components. I aimed to integrate this puzzle piece motif throughout the web pages to reflect this idea.
Styleguide
I started by sketching out preliminary concepts and establishing the groundwork. This involved developing our brand logos, selecting color schemes, determining typography
How it works
Use Case
California Department of Health and Human Services Campaign for improved maternal health via a state-wide coalition effort – The Transparent Health Coalition
Method
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We created a Health Coalition that will sponsor a Health Data Sharing Awareness Campaign.
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We have developed features that can greatly empower patients in comprehending, taking ownership of, using, and willingly sharing their health information with increased confidence. At the core of this empowerment is a comprehensive data privacy and security framework, meticulously crafted to address patients' concerns and equip them with the knowledge needed to make informed decisions about sharing their health information.
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Within this framework, we have incorporated clear and concise language that elucidates the process of collecting, storing, and sharing patient health information. It also presents the measures implemented by healthcare providers to uphold the confidentiality, integrity, and availability of patient data.
Home
Why Now
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Users/Patients: Request the platforms they use to commit to signing a pledge and/or becoming part of the coalition, and subsequently, implement the "data share" portal.
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Companies: Commit to signing a pledge and/or joining the coalition, followed by the implementation of the "data share" portal.
Resource – Company
Resource-Consumer
API TEMPLATE
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We have developed a framework and designed an API for companies to integrate into their platforms. This API template is designed to cater to individuals facing various challenges, including birthing women.
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Resource pages are designed to educate and empower consumers for future interactions with health apps and web portals.
Take Action – Company
Take Action – Patient
CTA (Call to Actions):
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Users/Patients: Request the platforms they use to commit to signing a pledge and/or becoming part of the coalition, and subsequently, implement the "data share" portal.
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Companies: Commit to signing a pledge and/or joining the coalition, followed by the implementation of the "data share" portal.
Data Design Template API
Below is the API template that has the potential to establish a standardized approach for defining and implementing data into mobile design, ensuring efficiency, accessibility, and relevance for both patients and users.
Reflection
The goal of this project was to contribute to a positive societal impact by empowering patients and encouraging greater transparency among companies when utilizing patients' health information.
If I were to pursue further development of this project, I would explore the potential of in-app gestures and investigate methods to offer users a more personalized experience within the app.
In its current state, I'm gratified to have conceived a product concept that can provide value and enjoyment to users.