Clinician and patient perspectives regarding the social determinants of health data collection process

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A study published in the Journal of the American Medical Association (JAMA) set out to evaluate patients’ experiences when sharing social determinant of health (SDOH) data with clinicians, as well as clinician, patient and care partner perspectives on possible barriers to, and facilitators of, the processes of collecting, documenting and exchanging the information. Research showed that clinicians and patients agreed regarding the importance of SDOH data, and they desire a structured, standardized method of SDOH data collection. Issues that arise in the data collection process include beliefs about how the information will be used, the clinician-patient relationship, accessibility of collection technology and scarcity of appointment time and staff.

“As national efforts focus on promoting standardized data collection, this qualitative study of the experience of collecting, documenting and exchanging SDOH data uncovers the ongoing barriers to widespread adoption of uniform approaches to documentation and factors that may help to lower them, including greater transparency and education, strong patient-client relationships and additional financial incentives and resources to allow for greater time with patients and targeted assistance,” the authors of the study wrote in JAMA.

“A multifaceted approach to addressing the issues raised by clinicians and patients in this study is required to ensure that such data can be captured in a way that improves care and allows for progress toward an equitable health care system.”

In 20 focus groups conducted across the U.S. between September 2022 and February 2023, researchers analyzed 235 individuals: 109 clinicians, and 126 patients and care partners. Clinicians and patients agreed that SDOH data is important for clinicians to know, and the groups expressed shared interest in the development of a structured and standardized way to collect SDOH data, accompanied by additional time for more in-depth discussions during visits.

Uncertainty regarding SDOH data usage

The groups identified concerns regarding how SDOH information could be used as a barrier to data collection. Patients have less knowledge about the data collection process, which could create misunderstandings or communications issues, leading to concerns about data privacy. Clinicians reported solely using the data for its intended medical purposes (i.e. treatment, referrals.) they shared that they did not know whether their organization used the data for other purposes.

Patients also expressed concerns that the data could lead to discrimination or bias, reporting reluctance to answer certain questions they felt could negatively affect, or limit, their care. “Patients expressed particular concerns about sharing financial information, where they live and their level of education,” the authors of the study wrote. “This concern was prominent in the groups of Black patients, patients with disabilities, the LGBTQ+ group and among Spanish speakers.”

Clinicians echoed these concerns regarding potential discrimination or bias and expressed their concerns regarding SDOH data collection from third party sources, including social service agencies, schools or other organizations. If information is filtered through the perceptions of the documenting individuals, clinicians fear it may reflect unspoken biases.

The clinician-patient relationship

Clinicians and patients mutually agreed that a poor clinician-patient relationship is enough to hinder the exchange of SDOH data. Clinicians expressed discomfort regarding asking patients sensitive questions, and patients also shared concern that clinicians could be uncomfortable during the questioning process. Patients are more willing to share their information with their primary care provider, rather than a clinician with whom they have no report. According to the study, patients suggested that if they had to grant permission for data to be shared with other clinicians, if they were only asked to share information that they believed was relevant and if they could share information electronically with clinicians of their choosing, they would be more open to sharing the data.

Structural issues

Both groups were reluctant to discuss SDOH data if the practice did not have resources available to address the associated issues. Time constraints, in addition to understaffing and underequipped staff, were also listed as common barriers, with staff members unaware of the importance of SDOH, or underprepared to discuss the topics, being a notable shortcoming.

Technology

Technological issues were identified as barriers by both groups, as well. Clinicians reported difficulty documenting SDOH data in EHRs, in addition to difficulties with the collection and retrieval of said data. Patients expressed concerns about the safety of their electronic data, and lack of familiarity with technology.

Other concerns and recommendations concerning the collection of SDOH data involved policy involved changes to policy, with clinicians advocating for SDOH-related discussions to be reimbursable, and that conversations with patients regarding SDOH data collection should be financially incentivized. Clinicians were split about when the data collection process should occur, with some arguing it’s best to collect prior to a visit, and others prefer it do be conducted during the visit. Patients, however, shared that they had more time to provide thoughtful answers when questionnaires were conducted ahead of time, through online portals.

“Additional curricula during clinical training and continuing education focused on talking with patients about SDOH issues could increase comfort with discussing these sensitive issues, as could enhanced training for clinic staff who may be collecting SDOH information as one of many tasks conducted during the patient check-in process,” the authors of the study wrote.