Why do people turn down social risk assistance offered by their doctors’ offices?

After decades of research documenting the profound effects of social factors on health, such as income, education, employment, food security, and neighborhood, the health care sector has finally begun grappling with these so-called social drivers of health.

The health care system’s response has included efforts to identify patients and families experiencing social risk factors. But to the surprise of some, a significant number of people decline the assistance offered by their health care teams.

How these risks are identified vary greatly across practices: Patients or their caregivers can complete a questionnaire; a medical assistant or other staff member (such as a community health worker) can ask patients or caregivers a set of standard questions in person and then record those results on paper or directly into the electronic health record; or clinicians can have a conversation with their patients about social risk factors. The primary focus of these screening programs is to link patients and caregivers to resources (either on site or in the community) to assist with — and ideally resolve — identified social risk factors.

In a survey published in 2019, 67% of medical practices and 92% of hospitals were asking some of their patients about at least one of five core social risks. The American Academy of Pediatrics and the American Academy of Family Physicians both now recommend that primary care providers ask their patients about social factors and address them if needed as part of routine primary care visits. In 2021, half of all states required social risk screening in Medicaid managed care contracts.

In May 2022, the Centers for Medicare and Medicaid Services finalized a rule requiring Medicare special needs plans to include questions about social risks in their annual member health risk assessments, starting next year. And in August, CMS finalized a rule requiring that, starting in 2024, hospitals report social risk screening rates as part of the Hospital Inpatient Quality Reporting Program.

As engaging with patients about social risks has spread across the country over the past five years, our research team at the University of California, San Francisco, noticed a strange but consistent pattern: Although many patients — often dismayingly high percentages of them — were acknowledging having social risks, a much lower number were taking advantage of the assistance offered. In one study of nearly 40,000 pediatric encounters, only 14% of those with social risks requested a referral for their needs. In many other studies, the fraction interested in assistance was below 50%.

Why might that be? And what can be done about it?

To help answer those questions, our team, with funds from the Robert Wood Johnson Foundation, awarded grants in 2019 to six different research groups to explore these questions from different angles. What these researchers learned, recently published in a supplement of the American Journal of Preventive Medicine, highlights three key factors, as well as some solutions.

Improving screening tools

Existing tools used to screen for social risks aren’t necessarily identifying patients who want help. To be fair, the tools were designed to identify risks, not interest in assistance. And just because someone is facing issues related to food insecurity or housing doesn’t mean they want help with that issue. It may not be the most important challenge facing them right then, or they may feel like they already have the help they need. (An interesting pattern that emerged across several studies was patients declining assistance because they felt that others might need it more.)

An additional challenge is that a number of commonly used questions ask about risks over the past year, lumping together individuals experiencing current issues with those who faced risks in the past but aren’t currently experiencing them. This approach can identify people who might be at higher risk in general, but is not zeroing in on those with current needs.

The context in which these questions are asked may also contribute to inaccurate results. In all parts of the health care system, care teams were stretched thin before the pandemic, and things are only worse now. So it is likely that social risk screening questionnaires — which ask about sensitive and potentially stigmatizing issues that care team members often haven’t been well trained to handle — is not happening in ideal circumstances, resulting in inaccurate results.

One simple fix to some of these issues is to add a question about interest in assistance, as organizations are increasingly doing. Another fix is to change the time reference for questions to refer to the present or recent past.

Increasing confidence in the social risk assistance offered

Some people turn down assistance because they aren’t confident their health care provider can help them with nonmedical issues. In the context of a visit for a pressing health issue, where patients know they have very little time with their provider, it makes sense that patients may not respond to offers of nonmedical assistance, as that’s not what they’ve come for — or what they think their health care provider might be qualified to do.

This may change, however, as offers of assistance with social services become more commonplace in medical settings. People are more likely to be interested in social assistance offered by their health care providers if they have been asked about social risks before, presumably because their comfort with being offered social services in a health care context grows with repeated exposure. It may also be possible to increase interest in health care-based assistance by better explaining what is being offered and why.

One study in the supplement found that patients reported higher rates of interest in assistance and higher perceived helpfulness of screening when medical assistants introduced and explained the goals of screening, compared to when screening forms were handed out during check-in without any verbal explanation.

Health care teams can also make the assistance they offer more appealing and helpful. Handing over a list of local social services may not be that useful to people who are likely already aware of existing community resources. Helping them fill out applications and navigate the complexity of obtaining appropriate social services may be more valuable, especially for those with limited English proficiency and/or low literacy.

Some studies have also shown that receiving social service navigation, even from volunteers, can make patients feel listened to and cared for, providing a less tangible but no-less-important benefit. Direct on-site provision of services, such as free legal assistance, food, or tax preparation may also be more attractive to patients than referrals that require them to follow up elsewhere.

Ultimately, health care teams should spend some time asking patients what kind of assistance would be the most helpful for them before investing in solutions that may not be what patients want or need. There is also much that health care teams can learn from social services professionals, who have been doing this work long before the health care system became interested in doing it.

Diminishing the stigma of needing help

One crucial reason some people turn down offers of assistance is because of fear of disappointment, stigmatization, or other negative consequences from seeking help. Some patients, for example, may have already explored all available resources and found that existing organizations can’t help them, either because the agencies are underfunded or because they don’t meet the agencies’ eligibility requirements. So they turn down offers of assistance because they know the resources won’t help them and don’t have time to waste.

Some turn down assistance because of strong prior negative experiences with social service agencies. They’ve been made to feel embarrassed about their situation or looked down upon for needing assistance, and they understandably don’t want to experience that again. Others, particularly parents and undocumented individuals, worry that seeking out services can trigger negative consequences, such as the involvement of child protective services or immigration complications.

These issues are challenging, but there are ways to mitigate them. Health care professionals can help counteract negative narratives about poverty and social risks by ensuring that asking about social risks is done in normalizing, non-stigmatizing ways, and by framing the risks in terms of health. Screening and assistance should be offered as a standard part of health care for all patients, not based on staff judgement or patient demographics.

Knowing the socioeconomic challenges patients face is not just about helping them with those issues. It is also helpful for tailoring clinical care and may contribute to strengthening patient-provider relationships. Framing social risk screening as an essential part of health care for everyone may help counteract negative stereotypes and stigma associated with economic insecurity.

The push to improve social services

Health care professionals and organizations can contribute to strengthening the local social service infrastructure as the effectiveness of social service navigation is ultimately only as good as the services patients are being referred to. Health care organizations, particularly those with large economic footprints and financial resources, can directly contribute to improving social conditions by supporting local social service organizations and by directing their hiring, procurement, and investment activities to support community economic well-being, as promoted by the anchor mission model.

Health care professionals and organizations can also use their political clout to speak out about the importance of a robust safety net for improving health and health equity and to support policy and systems change to strengthen social services and social conditions. Although the latter may seem uncomfortable or inappropriate for health care professionals and organizations to engage in, without changes to improve the availability and quality of social services, the best screening and social service referrals and navigation will have limited impact.

Although it may seem surprising that a number of people who acknowledge having social risks do not avail themselves of the assistance that’s offered, there are understandable reasons why they decline. Some of these can be addressed by improving the utility of the assistance that is offered and better communicating why and what assistance is available. Other solutions likely require health care organizations to engage in community-level action and political advocacy to improve the effectiveness of their local social services and to counteract negative stereotypes and narratives about economic insecurity.

Fortunately, the health care sector has robust political capital it can use to support strengthening the country’s social services infrastructure and, now that it has realized the impact of social factors on health and health care costs, it has the motivation to use it toward that end.

Caroline Fichtenberg is a social epidemiologist and health services researcher, co-director of the Social Interventions Research and Evaluation Network (SIREN), and researcher in the Department of Family and Community Medicine at the University of California, San Francisco (UCSF). Emilia H. De Marchis is a family physician, implementation science researcher, affiliate faculty of SIREN, and assistant professor of family and community medicine at UCSF.