Published June 21, 2022
UB’s Institute for Healthcare Informatics (IHI) houses an electronic collection of health data that scores of UB investigators have found to be essential. Two key elements are the i2b2 and TriNetX databases, which offer searchable, de-identified clinical patient data. These already vital resources — both of which can be accessed on the IHI website — are about to become even more powerful.
In the near future, following years of preparation, data from more than 1.5 million Kaleida Health patients will be imported into i2b2 and TriNetX. This data will add to the already existing data from more than 2 million HealthNow and UBMD patients.
The impact for researchers will be extraordinary, says IHI Executive Director Peter Winkelstein, professor in the Department of Pediatrics, Jacobs School of Medicine and Biomedical Sciences, and chief medical informatics officer, UBMD. Winkelstein also serves as chief medical informatics officer at Kaleida Health, and a member of the board and steering committee for UB’s Clinical and Translational Science Institute (CTSI).
“From a volume standpoint, the implementation of Kaleida data will dramatically increase the amount of data that we have available for research,” Winkelstein explains. “It also adds to the types of data. Most of the current data that we have in i2b2 and TriNetX are outpatient data collected in doctor’s offices, and claims data sent to insurance companies for billing purposes.”
The Kaleida data, Winkelstein says, will add a significant amount of inpatient data.
“A lot of the inquiries we receive are from investigators who need hospital data for their study,” he says. “Therefore, this is a dramatic change for us and for the amount and kinds of data that will be available for research.”
One of the key individuals involved in implementing the Kaleida data is Jonathan Blaisure, chief research information officer for UB and Kaleida Health.
“We are still working on getting some of the technical network details set up so we can transfer data,” Blaisure says. “However, we do have the policies in place, and it has been approved by all the parties that need to approve it.”
Winkelstein notes that Kaleida has been a “great partner to the university on this. They are very involved, and they recognize the value of it. You obviously have to get all the right legal agreements in place, and everybody has to be satisfied around how the data is flowing and making sure that it is secure. We cannot say enough about how positive the relationship with Kaleida has been.”
Now that implementation is nearly complete, Winkelstein feels great enthusiasm over what this means for researchers.
“I am very excited to see this finally coming to a culmination, and interested to see how it is going to be used,” he says. “To me, making the data available is a huge accomplishment for us, but it is only the first step. Next we will be seeing how people are going to use this, and what questions they want to ask of the data. I think it is going to be tremendously valuable.”
Blaisure says i2b2 and TriNetX have proven useful for UB researchers since inception. (CTSI’s Recruitment Resources Toolkit features instructions and links to both i2b2 and TriNetX.)
“A lot of researchers use these tools for cohort discovery, post-protocol approval,” Blaisure explains. “They have a clinical trial or a research study, and they are recruiting patients. They will use TriNetX and i2b2 to get a quick count of how many patients meet their inclusion-exclusion criteria. The other portion of it is pre-protocol approval. At either point, we can provide data sets in many different formats based on a researcher’s requirements.”
Kenneth V. Snyder, associate professor in the Department of Neurosurgery and co-director of health system science in the Jacobs School, and vice president of physician quality at Kaleida Health, is a strong proponent of i2b2 and TriNetX. In addition to using these tools with his own work, he recommends them to others.
“Researchers who are trialists will find TriNetX invaluable in order to assess the size of patient populations within our area based on specific inclusion and exclusion criteria,” he says. “In addition, artificial intelligence researchers and informatics professionals will love the amount and breadth of data sets for specific disease categories — including all medications and laboratory values — over time.”
Snyder is looking forward to seeing the impact of the Kaleida data on the UB databases.
“The fusion of this data is a major step forward,” he says. “The fact that this database in anonymized and updated in near real time will give any provider the power to ask important questions about their patient population and the impact of various interventions over time. Plus, the ability to look at outcomes with an equity lens will be critical for our action plans.”
Winkelstein hopes the Kaleida news will remind past i2b2 and TriNetX users about these valuable tools, while also bringing in researchers who have not yet made use of these resources.
“There are still lots of people who have not heard about i2b2 and TriNetX, and we have to keep working at that,” he says. “One of our jobs is to spread the word and to say, ‘Yes, the i2b2 and TriNetX data is available, and here is how to get to it.’ That is an important task.”
An Open Research Office session exploring i2b2 and TriNetX presented by CTSI will be held in the coming months.