The PRIDE study is collecting demographic data to help better study underrepresented patient populations.
While a significant number of LGBTQ patients experience discrimination and experience stigma in the healthcare system, people who identify as a sexual and gender minority also are underrepresented in healthcare research.
is collecting demographic and health information from participants who identify as lesbian, gay, bisexual, transgender, or queer, as well as suggestions for the health topics to be studied. For the study, participants completed demographic and health surveys, and shared more than 3,500 topics for future investigation. They wanted the researchers to study anxiety, depression, and suicide in these patients; the role of family support in both physical and mental health; and why many LGBTQ people persevere in the face of stigma and discrimination, among other topics.
“As the authors note, one reason this segment is underrepresented is because of the limited health-related data collection on this population-and one reason data collection is limited is because details related to sexual identity are typically stored in unstructured notes that are difficult to access and analyze,” says Elizabeth Marshall, MD, MBA, director of clinical analytics, Linguamatics, an IQVIA company in Boston.
“Using AI-based tools such as NLP [natural language processing], researchers and healthcare professionals can improve cohort identification through queries of unstructured data,” Marshall says.
The pilot phase of the study that began in 2015 used an iPhone app to recruit participants. The study relaunched in 2017 on a web-based platform to reach a more diverse pool of participants. It has attracted nearly 14,000 people and continues to seek more. As a result, they have found early success in building a study cohort, according to a study published in the Journal of the American Medical Informatics Association (JAMIA).
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However, some worry about the security risks with the app-based model. “Using cell phones to reach respondents who might be otherwise unlikely to participate due to stigma is an interesting way to keep them more comfortable than in person visits might,” says Suzanne Widup, senior consultant, Network and Information Security for the Verizon RISK Team. “However … while this venue might encourage people to participate, trust in infrastructure is a huge potential risk. With websites or email/mobile apps comes the risk of data breaches. Indeed, there have been studies that indicate that people are withholding information from their healthcare providers for fear of their information being breached, particularly where there is a stigma attached to the condition.
“Another concern with the approach is that traditionally, mobile apps have been shown to be built with less concern for security or privacy. Making sure the precautions are taken for data in transit (encryption) and at rest both on the phone and as it is stored on their own systems is critical. Making sure that the app does not grab more information than it needs to perform a function is also important.
“A systemic approach to securing this information is very important. One person must be charged with the responsibility, and they must be given sufficient power to achieve their goals. If the responsibility for securing the privacy of these respondents is diffuse, the likelihood of a breach rises.”