Research

Beth Kolko

Spring 2020

Privacy and Information Sharing in Global Health: A Scoping Review of Emerging Practices and Ethical Considerations

With the spread of digital technologies that facilitate the generation and sharing of health information, new data policies, practices and expectations are emerging among patients, Ministries of Health, non-governmental organizations, tech companies, and global health funders. These emergent practices have national and cross-border implications, for both direct patient care and health research. These practices can also be considered particularly acute for marginalized and vulnerable populations, which is the primary focus of this DRG.

For example, recently Kenya adopted a data privacy policy that mirrors the GDPR (European data protection policy). However, the translation from policy into practice remains unclear across broad health stakeholders. There is a need for a landscape analysis to better understand policies and practices in order to construct interventions that protect patient data and prioritize ethical approaches around data.

Using a multi-stage scoping review, this directed research group aims to formally document the existing policies and best practices of information sharing, data trusts, and secondary health data relative to research and data science initiatives. We will focus our efforts on three types of literature: (1) select organizations and their policies, (2) select national-level policies, and (3) empirical studies, occurring primarily, but not exclusively, in low- and middle-income settings. This review will also inform later qualitative research into attitudes surrounding data sharing by practitioners in this field. Ultimately, we aim to develop interventions that can guide global health stakeholders in protecting patient data while meeting broad healthcare needs.

Planned Activities: 

In this DRG, we will read and code relevant literature. Each week, students will be assigned papers to review and we will extract information from these papers by applying codes. In the weekly meetings, we will discuss the papers and the codes. We are looking for students with experience or interest in health data, data privacy, scoping reviews as a method, and understanding how marginalized or vulnerable populations can be disproportionately affected by technology policies. If warranted, students will have an opportunity to collaborate on future projects in this research area.

Required Availability:

  1. Attend 1-hour meeting each week: Friday, 2:00pm-3:15pm
  2. Dedicate at least 6 hours of work outside of weekly meetings
  3. Register for 2 credits of HCDE 496/596

This DRG will be led by HCDE PhD students Beth Dunbar and Akeiylah DeWitt, with guidance from Professor Beth Kolko. This DRG is open to both undergraduate and graduate students. If interested, please complete this survey by March 23th, including a brief statement of your interests, skills, and availability to attend meetings. We will review the applications and notify you of your status shortly after. If you have questions, please contact Beth Dunbar via email at edun@uw.edu.


Dr. Kolko's Research Group archive