An Interview with Cynthia Helphingstine, President & CEO of the Fairbanks Institute
It’s been several days since our last blog post. We all hit the ground running back in the office after the Thanksgiving break. We hope you had a wonderful holiday. It’s hard to believe Christmas and New Year’s draw so near…
I’m very excited about today’s blog post. It’s the first in what we hope to be a series of posts of interviews with the leaders at our BioServe Network partners. I can’t think of a better partner to kick of the series than the Fairbanks Institute for Healthy Communities.
I want to thank Dr. Cynthia Helphingstine, President and CEO of the Fairbanks Institute, for sharing a few minutes of her busy schedule to provide some additional insight into the Institute’s unique and exciting activities with our clients and readers.
1. Please provide a brief background on the Fairbanks Institute for Healthy Communities – and the genesis of INbankTM. Would you also kindly share some details about your professional background and how you became involved with Fairbanks?
Our story is one you have heard many times: a group of scientists develops an interesting idea – shares it with select business people – the idea is well received and sold to an investor who provides seed funding.
What makes the Fairbanks Institute’s story different is the investor is a local philanthropic organization that saw an opportunity to combine assets unique to Indiana, like our stable, health-challenged population and internationally recognized health IT capabilities, to create a resource that could improve community health by facilitating research on chronic diseases like heart disease and diabetes.
I got involved in 2007 when the Board asked me to step in as Interim CEO and put together a plan for making the Fairbanks Institute fully operational. I have a lot of experience helping companies get off the ground first in Chicago through my own consulting business, and most recently in Indiana where I have worked for several start-ups as well as for BioCrossroads, Indiana’s life science initiative. I’m now the Institute’s CEO and proud of what we have accomplished thus far.
2. Please describe the current studies within INbankTM. What will the various studies look like upon complete enrollment as far as patient numbers, sample types, etc? Are there plans for future studies?
We are currently enrolling participants in two studies – the first targeting coronary artery disease (CAD) and the second focusing on Type 2 diabetes. Both studies involve cases and controls, meaning people with the disease and people without the disease.
We are about half-way to meeting our recruitment goals of 1,500 people in the CAD study and 1,000 people in the diabetes study. We are collecting DNA, RNA, serum and plasma in both studies and are also collecting urine in the diabetes study. We would love to find a partner to help us start another study, perhaps in neuroscience or oncology.
3. Would you explain the data associated with the biological samples? How does the Indiana Network for Patient Care (“INPC”) exchange fit into the collection process?
Our data is what gets me excited—not only because there is so much of it, but more importantly because it’s dynamic not static.
Participants in our studies give consent that allows us to follow them via their electronic medical records. This provides incredibly rich phenotypic information and makes it possible for researchers to follow disease progression, monitor response to treatment, assess drug compliance and much more.
4. Would you speak to the general feedback from patients?
People participate in our study because they want to help future generations become healthier. They understand that, while there is no direct benefit from being in the study, their participation will help improve the lives of others in the future.
5. Would you walk us through the process involved in accessing the INbankTM?
Of course, INbankTM is available through the BioServe Network. And, interested parties can also contact me directly by phone (317-238-2459) or email with the details about the types of samples and information needed.
Once we understand what type(s) of people you want to study, what information you are looking for and what type(s) of sample you need, we’ll see if what you are looking for is in INbank™. If we have what you need, we’ll give you a price quote. Our prices are based on the number and type of samples, whether you need longitudinal data from the Indiana Network for Patient Care and whether you are an academic or commercial researcher. (Academics get a discount!) Once we agree on price, we will send you our terms and conditions agreement to sign so we can send you the samples and data. I want to point out that INbank™ does not require data sharing and has no intellectual property encumbrances.
6. Have any users accessed the samples to date? What would be your ideal end-user?
We have provided INbank™ samples and data to some academic researchers and are eager to see the results of their studies. An ideal end user would be a researcher who knows exactly what people they want to study to perhaps confirm a hypothesis or validate a biomarker, however, the breadth and depth of data on each of our study participants really opens up how INbank™ might be used by researchers.
7. Anything else we missed that you’d like to add?
I should add that because the community is essential to the creation of INbank™, we have made building community trust a priority. In fact, our model for community engagement – connect, build trust, enroll – has gained national attention which speaks to our efforts to be transparent and to the quality of INbank™.
INbank™ is the result of a “home-grown,” Indiana initiative, but it truly serves – and benefits – the global community.