Sexually transmissible infections are on the rise across the United States. But it’s not just monkeypox that’s surging, and it’s not just men who have sex with men who are affected.
The meteoric rise of dating apps has led to more casual relationships, which means users feel less obliged to disclose sexually transmissible infections (STIs) to one another. This is one of several factors that has helped propel rates of these diseases skyward: gonorrhea infections are up 45% and syphilis is up 52% since 2016. Congenital syphilis cases, which can result in stillbirths and death among babies being born to women with syphilis, are up 235% since 2016.
The lack of a modern public health data infrastructure makes it difficult to respond to both new and old infectious disease threats.
A digital health infrastructure that integrates data from across public health and health care systems would facilitate prompt diagnosis and treatment of people with sexually transmissible infections like syphilis. A 2018 study by the Centers for Disease Control and Prevention found that the most frequently missed opportunity to prevent a case of congenital syphilis was the lack of treatment following diagnosis. Without access to the results of tests ordered by an obstetrician, for example, doctors in the emergency department might not know that the pregnant patient they’re caring for needs treatment for a sexually transmissible infection. Integration of data would help catch patients who fall through the cracks of the fragmented U.S. health system.
The CDC provides minimal data on monkeypox cases in the U.S., reporting only case counts by state. As the country did during the early days of the Covid-19 pandemic, we are again relying on data from other countries to inform our understanding of the monkeypox outbreak, including critical variables like the time from exposure to symptom onset and the risk of transmission from asymptomatic individuals with monkeypox. The public health community doesn’t know what proportion of cases are arising from known contacts, which would provide some sense for how much transmission is occurring under the radar. Even the most basic demographic data, such as age, sex, race, and ethnicity, is lacking for monkeypox cases, all of which would help public health officials target their efforts and do so equitably.
Later this year, the CDC will be awarding almost $4 billion to strengthen public health infrastructure in the U.S., including making data systems more modern and efficient, improving interoperability between data systems, and making data more available. This represents a rare opportunity to think broadly about all the data systems that might strengthen public health responses.
More than half of sexually transmissible infections occur among people between the ages of 15 and 24; this is Generation Z, true digital natives. They live many aspects of their lives in the digital world, including their sexual relationships. The dating apps they use are built around specific communities. Tinder holds the lead position in the market with 75 million active monthly users, roughly one-third of all dating app users. Grindr is the leading app among gay, bi, trans, and queer (GBTQ) men with 11 million active users, 80% of whom are under age 35.
A few sites in the GBTQ community, like Grindr, allow for optional disclosure of HIV status — negative, negative on pre-exposure prophylaxis, positive, and positive with undetectable viral load — but there’s a problem with that approach: One’s STI status can quickly become out of date, and profiles do not allow for after-the-fact notification of sex partners of such changes. Most importantly, dating app profiles are notorious for misrepresentation — people say they’re taller, thinner, and younger than they are.
So without a way to validate claims, why would someone searching for a quick date be honest about their STI history? To ensure honesty about this important piece of information, dating apps could allow users to opt-in to connect their profiles to public health or health care data systems to validate test results.
Grindr has gone further than most other dating apps by alerting all users about new infectious disease outbreaks, including meningitis, hepatitis A, the SARS-CoV-2 Delta variant, and, most recently, monkeypox. These alerts target key risk groups in a way that public health officials can’t. Grindr’s alerts quickly raise awareness among young, sexually active people in specific geographic regions as they are thinking about engaging in the very behaviors that may expose them to new infectious risks.
While Tinder and its peer apps, like Bumble, Hinge, BLK, and eHarmony, could learn from Grindr’s approach to alerting users of community health risks, all apps could take an additional step in further personalizing these alerts.
Because data on sexually transmissible infections is especially sensitive and likely to raise legitimate privacy concerns, dating apps could incorporate the following approaches to improve the detection, treatment, and prevention of STIs:
First, remind users to get regular testing for STIs and link them to local resources. Users could be prompted to self-report a testing date and then be reminded to retest at regular intervals, such as every three to six months. The frequency of these reminders could be tailored to their risk based on their activity on the app, geographic location, and other relevant demographic characteristics. The dating apps could even partner with at-home STI testing services, which are more popular than ever before.
Second, provide an option to send anonymous notifications of positive STI test results to partners on the platform. Such a system would supplement the work of contact tracers at underfunded, overburdened local health departments, which are struggling to rebuild as the nation emerges from the Covid-19 pandemic. We recognize that any such system would confront major privacy, data security, and anti-harassment challenges, but overcoming these obstacles could provide immense public health benefits.
Third, confidentially and digitally transmit exposure and testing data to public health departments. As they modernize their data infrastructure, public health departments could reach out to dating apps to ensure their data systems can be made interoperable. There would be biases, of course, based on who uses particular dating apps. But dating app data could function as a sentinel surveillance system to alert public health officials of outbreaks emerging in their area and help them target testing resources where they may have the greatest impact and facilitate timely linkage to care. Conversely, users could opt in to have dating apps pull data on their testing and vaccination status from public health or health care data systems so they don’t have to manually update their profiles.
People are rightfully concerned about giving over more data to tech companies. Dating apps already collect a wealth of information on their users including age, race, ethnicity, location, and basic health information such as height and weight. Beyond that, these apps store even more sensitive information such as photos, videos, and metadata about connections (such as likes, favorites, and views) and conversations between users. These apps could be doing more to protect and care for existing user data through encryption and other data security best practices. Public-private partnerships could facilitate speedier adoption of stronger protections for sensitive user data and simultaneously unlock new public health benefits.
If done safely and securely, dating apps could help users avoid sexually transmissible infections while at the same time helping public health agencies, researchers, and communities to respond more effectively to emerging threats to public health.
Céline Gounder is an internist, infectious disease specialist, and epidemiologist, and a senior fellow and editor-at-large for public health at the Kaiser Family Foundation and its health news service. Michael Donnelly is a queer community health activist and data scientist with a specialty in forecasting, policy, and public health analysis whose work helped the CDC detect and respond to the Delta variant outbreak in Provincetown, Mass., during the summer of 2021.