Vanessa Barone, Research Scientist, Sage Bionetwork

Woody MacDuffie, Director of Design, Sage Bionetworks

Yini Guan, Graduate student and Design Intern, University of Washington and Sage Bionetworks

Stockard Simon, Designer, Sage Bionetworks

The Privacy Toolkit for Mobile Health Research Studies

Providing biomedical researchers with a catalog of privacy design patterns for their digital studies.

 
 

Problem

In the age of continuous data breaches, people are concerned about data privacy and security. The mobile health (mHealth) research space is not immune to this concern. For mHealth research studies to be successful, biomedical researchers need to meet these concerns head-on. Biomedical researchers often default to only addressing privacy concerns in the informed consent form and privacy policy which only surface at the onboarding stage of study participant’s journey using a mHealth research study's app.

After the onboarding stage, a study participant may still have concerns about the collection and handling of their data. They are left feeling frustrated and confused about the data they are sharing with researchers, in turn increasing their likelihood of ending their study participation prematurely.

Problem Storyboard.png


Solution

Our solution is to provide biomedical researchers with a privacy toolkit of design tools and patterns to use throughout the user journey of their mHealth studies that allow users to learn more about data privacy and manage their data. The aim of the toolkit is to provide researchers with a catalog of privacy patterns with accompanying use cases to assist them in using the appropriate patterns in their mHealth applications.

By using privacy patterns at the appropriate time, the patterns enable the study participant to understand the types of data that are being collected by the research study app and clearly understand how they have the ability to change their data sharing permissions at any time. These multiple touchpoints build a trusted partnership between the research team and the study participants.

Who is this for?

    1. mHealth researchers, designers, and engineers

    2. mHealth research participants

    3. Funders of mHealth studies (pharmaceuticals companies, government, etc.)

    4. Consumer product companies

Case Study

Samantha, a mHealth researcher has received funding from a Pharmaceutical Company to create a study using a mobile application (app) to learn more about a common chronic disease. Her app will collect the following information from the research study participant’s phone: location, motion, and voice data. She has decided to use some of the design patterns in the Privacy Toolkit to ensure her study participants are well informed on data privacy and have the ability to control what data is being collected by her mHealth app.

Tom hears about a mobile health study on the radio that is looking for study participants with a common chronic disease. Tom has this chronic disease and is interested in participating in a research study.  At work, Tom checks out the study’s website and finds out he is eligible for the study (see below).

He starts the consent process at work, bookmarks his spot in the consent and then finishes the process at home (see below).

As part of the consent process, he is clearly able to learn about the data that is being collected and how the researchers plan to use his data. The researcher uses a customized informed consent process, which provides Tom the ability to consent to the use of GPS and motion data but says no to the collection of voice data (see below).

This is displayed in an easy to read and understandable consent form that is emailed to him for future reference. He is excited about participating in this study. The app also provides him with timely notifications on the researchers who are accessing his data in an easy to understand visual. Tom is happy contributing to research due to the study’s transparency on their data collection and security. Tom is so happy with his study experience he recommends the study to his support group. Samantha is happy she is able to recruit and retain enthusiastic research participants.


Related work

References