In just two months, an Apple ResearchKit-based study of health issues important to LGBTQ communities has enrolled up more than 14,500 people across the U.S., up from 600 when organizers started publicizing the effort.
“We didn’t have any notion of what to expect, but I can tell you we’re blown away,” said A.J. Triano, vice president of digital for Thread Research, the ResearchKit-focused division of Tustin, California-based healthcare advertising agency Thread, that helps include patient voices in clinical trial recruitment. Thread Research is recruiting participants for the The Population Research in Identity and Disparities for Equality (PRIDE) Study on behalf of the University of California, San Francisco.
“When you have patients with an unmet need and you give them a voice to tell researchers what is important, they will absolutely use it,” Triano told MedCity News at the end of CONVERGE in Philadelphia. He earlier spoke on a panel about ResearchKit and the Apple Watch.
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Thread is recruiting for PRIDE through an iPhone app that includes a custom module that Triano called a “Reddit-style” forum for suggesting topics and giving a rationale as to why they are important. Others then can comment on and rank topics.
Through Sept. 2, users had suggested more than 3,000 unique research topics, Triano said, and there had been upwards of 4,400 comments and replies. “That’s really strong engagement from the community,” Triano said. Those comments have drawn 38,000 up votes and 3,000 down votes, he added.
“ResearchKit has been a phenomenal way to get fast access” to potential trial participants, Triano said.
As reported in June, UCSF’S PRIDE Study will comb through the responses to design a series of questions designed to get a longitudinal picture of LGBTQ health in the U.S. Triano said to expect the questions early next year. The questionnaire will be added to the app, though the study itself will be disseminated over multiple online and offline channels, he said.
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“Based on insight, we are making changes as we go,” Triano said.
Photo: Screen shot of PRIDE Study app
