Thank you to everyone who helped make the ResearchKit Summit a success!
It was clear from the high turn out that there is a high level of enthusiasm for using ResearchKit to enhance the clinical research process at Duke.
Our hope is to keep the conversation going, so stay tuned for future updates and check out the resources at the bottom of the page.
Congratulations to our lucky iPad winner, Aline Grüneisen, MBA, Fuqua Class of 2015, Director of Outreach, Development and Special Ops, Center for Advanced Hindsight.
Introductory Remarks from Dr. Iain Sanderson:
Good afternoon. I want to thank you all for attending our first summit on ResearchKit, a software package for creating engaging research applications for the iPhone that includes consent. I want to thank our panelists, Sarah Farrell from Apple Corporation; Ricky Bloomfield, from DHTS and our own Director of Mobile Health Technology Strategy , The Autism and Beyond Study team under Dr. Helen Egger and Dr. Guillermo Shapiro, and the Sixth Vital sign study team form the DCRI under Janet Prvu-Bettger. I’d also like to thank Cory Ennis, Assistant Dean in the School of Medicine and Johanna O’Dell from the Project management team in the Office of research Informatics for making this Summit possible.
In terms of logistics, each of the presenters will be talking for 25 minutes or so followed by a panel discussion and Q&A session which I will MC.
Every now and then in your career an event occurs that you know – in your gut – that it is one of the defining moments that you will reflect on later. Implementing Epic at Duke was one such initiative – it concentrated a lot of minds. ResearchKit is another of those. The moment I saw it announced in March last year and demonstrated I felt it was a disruptive technology for clinical research. After all, it uses a ubiquitous device to solve one of the most pressing problems in clinical research – that of engagement and recruitment, rich consent, and patient choice not to mention the use of the use of the iPhone itself as a study device. Personally, I spent a lot of time and the NLM’s money creating a permissions management system to use on hospital systems that weren’t ready for the change in South Carolina, and along comes Apple with a technology kit that eclipses that work overnight.
So it wasn’t hard to support the first ResearchKit App in development at Duke. We made space in our budgets and project portfolio to support the creation of Autism and Beyond – many folks did from iID, on the university side, to DHTS in a remarkable collaboration that won a prize and wth the result we’ve released an app that has recruited more patients in a few months than years of conventional effort by the study team. The strategy in the School of Medicine was quite explicit – make a splash with this first application as an upfront investment and good things will happen – money and resources will be bound to follow. That was perhaps a bit naïve. We spent several hundred thousand dollars supporting the first app and it is clear that that kind of subsidy will not be possible going forward.
So the Dean has asked us to gauge interest in ReseachKit by our faculty, with a view to understanding potential demand. Is it a disruptive advance? Can you do this with REDCap? How should the SOM invest to support our faculty? Can we bring the cost of building these apps down? What controls and policies are necessary as these apps do deal with PHI and carry the Duke name? You could have a computer Science Student build the app - that’s quite easy thanks to Apple, but the backend fr storing PHI and being open to the web at high volume presents a problem for a security conscious health organization like Duke. All these questions need answering…. Hence this summit.