The backstory of Duke researchers deploying an ambitious new autism study as an iPhone app has plenty of drama and a huge cast of characters, but it’s only a few months long.
As soon as programmer and physician Ricky Bloomfield MD, head of mobile technology strategy for Duke Medicine, heard Apple’s announcement of an open platform for medical studies called ResearchKit, he reached out to Geraldine Dawson PhD, director of the Duke Center for Autism and Brain Development. ResearchKit is a new open-source framework developed by Apple that allows researchers to create app-based studies with a global reach.
Dawson had been working with computer scientist Guillermo Sapiro and child psychiatrist Helen Egger on teaching computers to interpret videotaped clinical interactions. Dawson, Egger and Sapiro had already received several grants to further their work, including one of the 2015 Coulter Awards that promote collaboration between the School of Medicine and the Pratt School of Engineering.
The investigators already had an iPad app being tested by healthcare providers in clinic settings, but the prospect of building a publicly available release on the ubiquitous iPhone for use in the home sounded attractive.
“It turned out to be a good match,” Bloomfield said. “They were ready, willing and motivated.”
The development of this app was supported by the Duke Institute for Health Innovation (DIHI) in partnership with Duke University School of Medicine, Duke Office of Research Informatics, Duke Health Technology Solutions, the Office of the Vice Provost for Research, the Information Initiative at Duke, and Duke Pratt School of Engineering. DIHI focuses on catalyzing transformative innovations in health and health care at Duke University and Duke Medicine.
The Duke Partners who supported the creation of this app:
- Duke School of Medicine
- Duke Institute for Health Innovation
- Duke Office of Research Informatics
- Department of Child and Family Mental Health and Developmental Neuroscience, Department of Psychiatry and Behavioral Sciences
- Integrated Pediatric Mental Health Initiative
- Duke Center for Autism and Brain Development
- Office of the Vice Provost for Research
- Pratt School of Engineering
- Information Initiative at Duke (iiD)
- iiD Information and Child Mental Health Initiative
- Duke Global Health Institute
- Social Sciences Research Institute
- Bass Connections
- Peking University Health Science Center
Development of this app was supported by National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health under award number UL1TR001117 (the Duke CTSA). The content is solely the responsibility of the study team and does not necessarily represent the official views of the National Institutes of Health.
Support also provided by: The Duke Information Initiative, the Duke Endowment, the Coulter Foundation, the Psychiatry Research Incentive and Development Grant Program, the Duke Education and Human Development Incubator, the Duke University School of Medicine Primary Care Leadership Track, the United States National Science Foundation, the United States Department of Defense, the Office of the Assistant Secretary of Defense for Research and Engineering, and the National Institutes of Health.
Special thanks to our external collaborators:
With financial, logistical, and development support from Duke Medicine, the Vice Provost for Research, the Duke Institute for Health Innovation (DIHI) and the Information Initiative at Duke, the project was green-lighted by Duke and pitched to Apple.
“Apple said ‘We want to help you get this into the ResearchKit,’” recalls Sapiro. “ ‘But you need to do it in the next four weeks!’ ”
Under that pressure, the project quickly grew to encompass dozens of engineers and computer scientists, Medical Center developers and programmers, mathematicians, experts on informed consent of patients and more. All of them were Duke people.
“Our students are the heart of this,” Egger said. “It was an amazing team effort, with junior people and senior people collaborating intensely.”
Suresh Balu, director of the Duke Institute for Health Innovation, said the ability of Duke to move the project forward so collaboratively is something that few other places can do. “It puts Duke University in a very special place,” he said. “Seeing a team comprised of development expertise from across Duke is exciting, given our institutional ability to work with industry in both research and innovation for high impact transformation in health and healthcare.”
Buckling Down to Work
In addition to phone calls and emails through long days and even longer weekends, the core group met in person each Wednesday morning in a glass box conference room in Gross Hall, where the autism video team shares office space in the Information Initiative.
DIHI and the School of Medicine’s Office of Research Informatics sent four programmers to Apple Headquarters in Cupertino, California for a week to work with Apple experts and bring back their knowledge to the larger team. “We were delighted to be part of such a cross-cutting team,” said Cory Ennis, assistant dean for IT at the School of Medicine. “This was an incredible example of using innovative technology to improve research, and that is what we are striving for at Duke.”
The programmers wanted the app to do video analysis of the child’s face in real time as he or she was interacting with the device, but they were finding that the processors in older iPhones couldn’t keep up with 30-frame-per-second video.
The developers weren’t only worried about the technology, but also about the user experience. They wanted to give users the option to post their data via WiFi rather than paying for capacity on their cellular phone data plans. Even though the entire interaction of quizzes and videos should only take about 20 minutes, Egger felt it important to allow users to save their progress and resume later if they were interrupted – they are parents of young children, after all. And they had grand plans for launching the app in multiple languages. After all, autism respects no national borders.
While struggling with all of these programming problems, Apple’s announcement of the product was a moving target, heavily shrouded in the company’s famous secrecy. But everyone knew there wasn’t much time. First they were supposed to be ready in July; then it was on the September rollout of the iPhone 6s. Then it was put off for a special ResearchKit announcement in October.
A Spanish translation was put on hold to make the deadline, but Sapiro had still been conferring with colleagues in Argentina the week before. “It’s like they’ve been in our meetings!” he told the assembled team during one mid-August meeting. “They’re taking very similar approaches and want to assess 15,000 families in the next two years.”
The Chinese version was still in process, however. In late August, Egger went to China with the support of Vice Provost for Research Larry Carin and Mike Merson, director of the Duke Global Health Institute, to clear the way for a Chinese language version of the app. China is the world’s largest iPhone market.
The first hurdle in China was going to be securing institutional review board clearance from Peking University to conduct this app-based study with children and parents. “Mike (Merson) just got on the phone,” Carin said. Since Duke had worked with Peking University to establish their IRB standards, “he called people at PKU that he trained.”
It took more than that, of course, but the Chinese version is on track to be rolled out within a month of the U.S. release.
“This was an incredible team of people,” Carin said. “This is Duke at its finest. To be able to deliver on this in the kind of time we had – what other university could deliver on that?”
by Karl Bates and Marsha Green