Patients’ thoughts on hospitals collecting race, financial and social needs data

Patients at one of the largest hospitals in Toronto believe collecting their social and financial needs information can improve care, but they don’t expect hospitals to do it because of the resources needed to address social needs, according to a new study.

Researchers interviewed eighteen patients in the general internal medicine inpatient unit at St. Michael’s Hospital to understand their thoughts on sociodemographic (e.g., race, sexual orientation) and social needs (e.g., financial needs, housing) data collection. The study team included researchers at St. Michael’s Hospital, University of Toronto, North York General Hospital, University Health Network, and Sunnybrook Health Sciences Centre.

The study, published in PLOS ONE, found that patients wanted hospitals to provide them with holistic care, which could be possible by helping providers know them more as a person through sociodemographic data collection. However, patients noted hospitals often focus on physical symptoms rather than causes tied to their social needs.

“There’s a clear juxtaposition and tension between what patients think that the hospital should do versus what they think the hospital could or would do,” said Victoria Davis, lead author of the study and Research Coordinator at Upstream Lab, Unity Health Toronto.

Importantly, patients fear potential racism when disclosing their social needs to providers. ‘Only ask if you can take action’ is one of the themes that emerged from the interviews, showing patients’ concerns with disclosure. They also stressed the importance of having a trusting relationship with their healthcare providers.

On a different note, patients expressed data collection could help providers tailor their care and assist with providing resources to food banks, housing, and other publicly funded services. They also mentioned the importance of receiving care from staff who share the same culture as them, which can guide hospital hiring practices and future hospital programs to tackle social needs.

“Society has pushed a lot of people to the margins. But every single person deserves the care and support they need to reach their full health potential. Some patients need more support than others – it’s up to all of us to figure out how hospitals and other organizations can provide the needed level of care and support,” said Dr. Irfan Dhalla, Vice-President of Care Experience and Equity at Unity Health Toronto and co-author of the study.