When the IU Precision Health Consent program started in 2018, research assistants met with patients in-person to ask if they would be willing to donate an extra vial of blood as part of a regularly scheduled blood draw. That blood would be made available to researchers who are working to find treatments and cures for diseases through the Indiana Biobank. Back in March, the IU Precision Health Consent team learned they would need to connect with patients in a different way, in light of the ongoing COVID-19 pandemic.
“It all came to a screeching halt overnight and we could no longer have research assistants in the clinics,” said Brooke Patz, who is the program manager of the Indiana Biobank. “We had to regroup and decided to start consenting remotely.”
The Indiana Biobank team collaborated with IU Health to start calling patients who had upcoming visits, with the goal of consenting them to participate in the IU Precision Health Consent program before their appointment. The Indiana Biobank and IU Health teams worked together to figure out how to overcome logistical challenges and develop a streamlined process.
“COVID-19 has really created a collaborative environment,” said Patz. “We’ve all rolled up our sleeves, gotten involved and seen the value in working together closely with our various partners.”
During the remote consenting call, a research assistant tells the patient about the study, and if the patient is interested, the research assistant can send a link to the electronic consent. There is also an option for patients to watch a video consent to learn about the Indiana Biobank. After the patients consent to participate, the information gets linked with their patient profile, signaling to clinic staff that the sample can be drawn during their next visit.
“It just allows us to obtain the sample without ever physically being in the hospital or being with the patient,” said Patz. “We are now also able to collect remnant samples from patients. In this process, we utilize the same remote consenting process. However, instead of a future blood draw, patients are donating their left-over blood that was collected during a recent visit to the doctor. This blood would otherwise be discarded. By repurposing it, we are able to make the sample available to researchers to support their discovery research.”
Since developing this program, Patz says other organizations have reached out in an effort to replicate their electronic consenting model. She says while they would prefer to consent in-person if that were possible, consenting electronically is another way to add valuable samples to the Indiana Biobank.
“I think that may be the one positive thing about COVID-19, people are seeing the value in research and new discoveries,” said Patz. “Then they’re enabling new discoveries by participating in research.”
Of the 50,000 samples at the Indiana Biobank, more than 10,000 have been added through the IU Precision Health Consent program. Hundreds of the subjects have been consented electronically since the COVID-19 pandemic started. Since researchers can work with a very small amount of DNA, each sample can be involved in countless studies.
IU Precision Health Consent is supported by the IU Precision Health Initiative. The Indiana Biobank is a program of the Indiana Clinical and Translational Sciences Institute (CTSI).