Inside the California Teachers Study: The Disruptor

March 6, 2017 | by Stephanie Smith

James Lacey, Ph.D., fresh off a conference call, walks quickly through a maze of cubicles inside a nondescript, beige building on the City of Hope campus. He stops at a small office occupied by two co-workers, his face bright with excitement.
James Lacey White BG James V. Lacey Jr, Ph.D., M.P.H.
“If there was an epidemiology version of a SAG award or an Oscar,” said a breathless Lacey, director of the Division of Cancer Etiology at City of Hope. “That would win it for this year.”

Clearly, this was not your typical conference call.

The one-hour conversation — IT-speak mashed up with epidemiology-speak — was about a new database designed to transform, or to use a term popularized in Silicon Valley — disrupt — the way large scientific studies collect and share information.

“It’s how we will take the idea that’s in anyone’s head and say, ‘Here, get your answers right away,’” said Lacey. “‘Get your answers as soon as you ask them.’”

On its face, the concept visited on the “Oscar worthy” call sounds simple: Take best practices from IT and marketing and apply them to more than 160 million bits of data collected over the past 20 years from more than 133,000 women involved in the California Teachers Study — a cohort Lacey now leads.

Up to this point, analyzing that data has been a relatively fixed, arduous, largely paper-based process.

Surveys filled out by teachers across California — including their eating, exercise and other lifestyle habits, as well as health outcomes — have been collected, analyzed and reanalyzed countless times. Think about it like pulling a chunk of Play-Doh from a big mound, molding it into a shape, then putting it back in the pile — over and over again.

The approach Lacey and his team are developing is an elaborate effort to digitize years of California Teachers Study data — to move away from the more traditional Excel-spreadsheet-and-email method of trading data sets.

“It’s collapsing what used to be a weeks-long or months-long process into 30 seconds,” said Lacey. “It’s real-time, cloud-based access, so we can spend our time solving problems instead of sending reports back and forth to each other, or wrestling with data on our computers.”

It may mean, in the near future, a researcher in New York, seeking data about multiple myeloma in women between ages 50 to 74 who live in rural areas, could get that data from the cohort by clicking a few boxes on a digital interface.

“It’s bringing the California Teachers Study into the digital sphere,” said Kristen Savage, M.P.H., administrator of the study and part of Lacey’s team.

Savage and Lacey say that what the California Teachers Study and other large cohorts have been doing until now is not necessarily bad — “Every other cohort is struggling with how to make this transition,” said Lacey — it just needs an upgrade.

That upgrade was abrupt and borne of necessity for Lacey and his team. In 2012, the group got a $10 million grant to collect 14,000 blood samples from willing study participants, and add an important layer to the self-reported data they had been submitting for years.

Soon after receiving the grant, the group was informed its budget and timeline would be cut. To streamline communication and reduce costs, the group used a stripped-down version of a marketing app called Salesforce to share information and organize its blood collection efforts.

“It was the variant of evolve or die,” said Lacey. “Innovate or die.”

It was also an auspicious step into the marketing world. Salesforce helps companies segment and target customers — something Lacey and his team later realized could be useful for tailoring communication with their large cohort.

“We think of the cohort as one population,” said Lacey. “But now we’re seeing it like any large population. It’s a combination of different subgroups and different preferences and different needs and different wants.”

Much like what is happening in modern marketing — for example, the two-way conversation occurring between companies and their customers on social media — participants in the California Teachers Study soon will get surveys tailored to previous survey responses, and have a say in what questions are asked on future surveys.
Kristen Savage White BG Kristen Savage, M.P.H.
“Our participants live in 2017, where you can log in to your provider’s website if you have health questions, or get personalized emails from clothing brands based on previous interactions,” said Savage.

“What we are doing is starting to ask our participants, ‘What is most important to you? What are you most interested in?’ Our plan is to reach out with that information and meet participants where they are.”

It is a departure from the usual way large cohort studies are run — a point where epidemiology and marketing are beginning to intersect. Lacey wants the scientific community to meet at that intersection, too.

One of his biggest goals is allowing a broader group of researchers access to California Teachers Study data.

“We want even more people to use the study data for even more analyses than we’ve been able to do in the past,” said Lacey. “Have the data be more democratic so that I can be looking at the same information that a collaborator is when she’s sitting Atlanta or Boston.

“It’s about more investigators answering more questions and generating more new findings.”

It's also a rare inclination toward openness in a community where data-sharing is a sensitive topic.

But then again, Lacey is a rare sort in the epidemiology field — donning crisp suits, even on casual Fridays, with neatly-coiffed red hair and amber-colored glasses. In his office, he is surrounded by tall stacks of paper —scientific papers, reports, grant applications — “The transition to a more web-based system and less paper is happening faster for the Teachers Study than for my own desk.”
 
On one wall, tucked in a corner, hangs album art for a 1974 Van Morrison double-album called, “It's Too Late to Stop Now.”

He grins as he describes himself as the antithesis of a “techie”; and how no one who knew him a decade ago when he was a researcher the National Cancer Institute would expect him to be where he is today.

“I was never really a computer guy,” said Lacey. “I’ve always been a late adopter and when I was in undergrad and grad school, there were still such things as computer labs.”
 
The Van Morrison album hanging in his office is a sort of reminder of that contradiction.

“As I find myself being an early evangelist, helping our field transition to a new, more connected, more integrated system,” said Lacey. “I keep going back to this phrase, ‘It’s too late to stop now.’”

For Lacey, it’s too late to stop the exciting momentum happening inside the nondescript building where epidemiology and the digital age are finally meeting. The NCI last year gave the group a five-year, $12 million infusion to continue its technology-driven approach to epidemiology, and Lacey and colleagues are beginning to request proposals for innovative research using its data.

“No one’s done this before,” said Lacey. “I can’t wait to get it out there because I just know it’s going to work. I know it’s going to work.”
 
 
**Research reported in this piece was supported by National Cancer Institute of the National Institutes of Health under award number R01-CA077398, UM1-CA164917, and U01-CA199277. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.


Stories of Hope is a monthly series that explores important issues in health care. This series is an inside look at the beginning, and future, of the California Teachers Study. Part 1 is a look at the statistician who would change how we view breast cancer risk, Part 2 is about the lead up to the beginning of the study and Part 3 about the teachers in the study. Tomorrow: A whole new way of looking at cancer prevention.

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