As a component of an ongoing research project to address gaps in medical care that contribute to delayed or missed diagnosis of serious diseases and conditions, AcademyHealth has engaged in an ongoing project, sponsored by a grant from the Gordon and Betty Moore Foundation, to examine the use of patients’ internet search data as a data source and tool to inform clinical diagnosis practices. The project, Exploring Consumer & Patient Internet Search Data to Improve Diagnosis, was initiated in part due to the apparent scarcity of peer-reviewed studies using search data for health research; conversations with subject matter experts have supported the notion that the relative lack of existing research is in part due to conceptions, both accurate and inaccurate, about prohibitive difficulties involved with obtaining the data. The overall goal of the project is to provide answers to the question of whether search data has significant utility in aiding diagnoses; to the extent that this utility exists, the project also seeks to identify barriers to research, and to provide recommendations for best practices in light of those barriers. The project has employed a multipronged approach including a Steering Committee, a series of workgroups composed of subject matter experts, and a white paper providing an overview of the existing scholarly literature on the subject.
As one component of the overall project, researchers with relevant experience applied to receive funding for pilot projects designed to further understanding of the limitations and opportunities offered by search data as a tool for research. Each application detailed a proposed pilot project, to be conducted over a year-long period, and to involve innovative research leveraging internet search data to inform medical diagnostic considerations in an array of clinical conditions and diagnoses. Upon completion, the findings from the pilot projects will be made publicly available to inform researchers using similar data.
Following a thorough review of the submitted applications, AcademyHealth has awarded funding to three of the proposed pilot projects. Below are summaries of the three awarded projects:
- The first awarded pilot project is titled “Pilot Study to Assess the Feasibility of Collecting Internet Search Histories from Patients with Newly Diagnosed Lung Cancer”. This project is being conducted through the Dana-Farber Cancer Institute. The primary investigator for this project is Dr. Elizabeth O'Donnell, who is an Assistant Professor of Medicine within the Department of Oncology at Harvard Medical School. The objective of the project is to investigate whether the internet search history of patients can assist with early detection of undiagnosed lung cancer, in light of the overwhelming tendency for diagnoses of lung cancer (the leading cause of cancer death in the United States) to occur at late stages.
- The second awarded pilot project is titled “Inclusivity in Precision Mental Health: The Role of Internet Search Data in Understanding Disparities”. This project is being conducted through the Georgia Tech Research Corporation. The primary investigator for this project is Dr. Munmun De Choudhury, who is an Associate Professor within the School of Interactive Computing at Georgia Tech. The objective of the project is to harness internet search data to fill critical gaps in understanding mental health disparities among minority communities and pave the way for culturally sensitive interventions informed by the unique digital footprints of individuals from these communities.
- The third awarded pilot project is titled “Exploring Consumer and Patient Internet Searches and Activities Related to the Diagnosis and Engagement in Treatment for Alcohol Use Disorder”. This project is being conducted through the University of Texas Health Science Center in Houston. The primary investigator for this project is Dr. Jane Hamilton, who is an Associate Professor within the Department of Psychiatry and Behavioral Sciences at the Health Science Center. The objective of this project is to investigate whether internet search information increases the readiness to change for consumers with problematic alcohol use resulting in the receipt of a formal AUD diagnosis from a provider and engagement in AUD.
The commencement of the projects will begin after a kickoff meeting, scheduled for April 30th. During the meeting, plans will be made to facilitate collaborations between the pilot projects and the Work Groups, and researchers will have the opportunity to network with researchers on the other funded pilot projects.
Further information can be found at the AcademyHealth website focused on diagnosis research. Innovation Horizons provided the research and analysis with support by the Gordon and Betty Moore Foundation.