Every month, the CTSI Stories Blog will post excerpts from ongoing conversations with the institute’s co-directors. This month, Martin Zand takes a break from the upcoming CTSA grant application to discuss the efforts that the CTSI is taking to expand research subject engagement.
People within the CTSI are well aware of what’s been going on here because it’s all we’ve been doing for the past two months – but for the benefit of readers elsewhere, can you give us a quick update on how the renewal grant application is going?
I can say, with much relief, that it’s been submitted to the NIH. More than 50 people have contributed to the grant-writing process, and it came together beautifully.
And… I’m sure you’d love to talk about something other than the grant this month.
Yes, please! I’d actually like to highlight what we’ve been working on in regards to expanding our research subjects engagement program. We’re part of an academic medical center, and so one of our goals is to integrate research into the clinical mission in a substantial and meaningful way. What I mean by that is: We want the people coming to the Medical Center for their care to also be aware of research opportunities, and we are trying to work on different ways of making people aware of research and helping them understand what kind of research opportunities are available. We want to make it easy for them to express interest, be contacted by researchers, enroll in consent to participate.
It’s my understanding that following up after research is also very important.
Yes, that’s the second part. We want to make sure that people get a real sense of what their contribution has been. So one of the missions of the CTSI is to try and create mechanisms by which investigators inform the people who participated in our research know what their participation has helped to build. People are very interested in that: “Well, what did you find when you took my blood? And did those findings lead to changes?” The other aspect of this would be if their participation also led to new research opportunities, like grants or new projects. When people give their time, it’s important for us to recognize that, and we have a responsibility to let them know what we did with whatever they contributed.
So how are you going about this?
We’re looking at several different routes. In terms of making people aware of research opportunities, we already have a research notification website where people can go and say “I’m interested in being contacted by researchers at URMC.” But we want to make this available on eRecord on MyChart. So one thing we’re exploring is the ability for a patient to click on a separate tab in MyChart that says “Research studies,” and if an investigator enters a set of criteria, then a research opportunity for that patient might pop up. And if the person checks the box to stay they’re interested, then that notifies the researcher.
Other studies might allow for different types of enrollment. Tim Dye and Karl Kieburtz have both had projects where they used an Amazon service called the Mechanical Turk to do survey research, and that allows you to do survey work across the entire world for very cheap. Ray Dorsey’s mPower app allows people to enroll and consent to research studies with their phone. So it opens up huge doors to what we might do in terms of expanding access to research in nontraditional ways.
We want people to be engaged, interested, and excited about the research happening at UR. It’s what distinguishes us a medical center, and hopefully improves healthcare in our community. Translating that research into medical care is what we do here at the CTSI.
Previous Director’s Updates:
July 2015 – Karl Kieburtz seeks feedback in the wake of the CTSI Town Hall meeting.
June 2015 – Martin Zand gives an overview of what will likely be different about the next CTSA renewal application.
May 2015 – Nana Bennett discusses the enhanced role of the Strategic Leadership Group.
April 2015 – Karl Kieburtz talks about how the leadership is preparing for the Clinical and Translational Science Award renewals.
March 2015 – Martin Zand introduces himself and discusses his interest in informatics and population-based research.
February 2015 – Nana Bennett discusses the CTSI’s Seminar Series on population health.
January 2015 – Harriet Kitzman reflects on her time as a CTSI co-director.