The vast majority of caregivers are heavily invested in making medical decisions for patients and searching for clinical information, according to an in-depth study.

Data from 633 caregivers, set to be released at today’s DIA meeting, show the vast majority (91%) are involved in discussions with patients about treatment choices, and 79% admit to searching for information on new treatment options on behalf of a loved one.

“Much is already understood about the challenges and burdens of caregivers,” said Ann Moravick, president of Rx4good, which fielded the study in partnership with 70 other organizations ranging from drugmakers to patient groups, “but until now, little was known about the extent of their role as medical decision-makers.”

It’s a role typically taken on urgently, in the wake of some new diagnosis or medical emergency: 43% said that was the case. Consequently, only 28% of caregivers reported having the confidence to make the necessary decisions and choices. Additionally, 89% reported frequently looking for more information on the condition, medicine, and treatment plans.

Caregivers reported having accompanied patients to an average of 17 doctor visits a year and an average of six different healthcare providers in the past two years. Some 85% said doctors treat them as a partner in care decisions.

Meanwhile, data also suggest Gen-Zers (9% of respondents) are sharing the role of caregiver with Gen-Xers (45%) and baby boomers (45%).

“These findings show the need to support caregivers in their significant role as medical decision-makers,” said Moravick in a statement.

For the full results, click here.