Overview
People worldwide extensively use internet search engines and browsers for health-related information, including symptom understanding, self-diagnosis, and self-treatment. The volume of health-related internet searches is immense. A patient's internet search history serves as a potentially valuable data source, offering insights into their diagnostic journey, both physically and mentally, leading up to their first health care encounter. This data has enabled researchers to track symptom evolution and even predict conditions. Additionally, linking internet search and activity data with health care utilization information can unveil disparities in health care outcomes based on factors like insurance type, race, and education. Empowering patients to understand the significance of this data and its utility is essential to enhance their involvement in owning their data and health, thereby driving the potential for improved diagnosis. Nevertheless, despite promising research on this subject, significant epidemiological questions, privacy concerns, patient consent, technical infrastructure, and the need for further validation and correlation with diagnostic outcomes remain pivotal in advancing this research area for the betterment of health care.
The primary objective of this project is to explore the potential of consumer and patient internet search data as a valuable diagnostic tool. By analyzing the wealth of information available through online search queries, the project endeavors to develop innovative methodologies that can aid health care professionals in making accurate and timely diagnoses. AcademyHealth and Innovation Horizons are engaging experts, funding and collaborating on exploratory pilot projects, and convening workgroups to consider the ethical, societal, and legal implications of utilizing consumer search data for health, with a focus on early disease detection and personalized health information delivery among other topics.
This effort comprises five key components:
- Data Analysis and Insights: Competitively selected pilot research efforts are analyzing internet search behavior for disease-related patterns using aggregated, anonymized data to inform diagnostic tool design.
- Collaborative Partnerships: Drawing from health care, tech, and academia, the project is partnering with experts in data science, epidemiology, and medical research to understand how internet data might offer insights in chronic disease, behavioral health, and cancer care, among conditions.
- Ethical Considerations: Due to health data sensitivity, the project has prioritized ethical data governance. An expert work group is addressing privacy, consent, and bias in search data and guiding best practices for maintaining privacy and security.
- Societal Impact: Using internet search data for diagnosis can democratize health care information, empowering patients. The project is assessing societal impact with a particular focus on digital access, health literacy, and information disparities.
- Policy Recommendations: Working with policymakers and advocates, the project is working to articulate appropriate internet search data use guidelines that align innovative diagnostics with legal and regulatory frameworks.
Publications & Resources
Harnessing Internet Search Data as a Tool for Medical Diagnosis
As part of this project, Gregory J. Downing, Lucas M. Tramontozzi, and colleagues at Innovations Horizons have published a white paper surveying the landscape of the uses of internet search data in medical research. The paper draws on both available peer-reviewed literature and interviews with subject matter experts. Read the full paper here.