Do patients want clinicians to ask about social needs and include this information in their medical record?

doi:10.21203/rs.3.rs-1597212/v1

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Research Article

Do patients want clinicians to ask about social needs and include this information in their medical record?

https://doi.org/10.21203/rs.3.rs-1597212/v1

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Background

Social needs screening in primary care may be valuable for addressing non-medical health-related factors, such as housing insecurity, that interfere with optimal medical care. Yet it is unclear if patients welcome such screening and how comfortable they are having this information included in electronic health records (EHR).

Objective

To assess patient attitudes toward inclusion of social needs information in the EHR and key correlates, such as sociodemographic status, self-rated health, and trust in health care.

Design, participants, and main measures

In a cross-sectional survey of patients attending a primary care clinic for annual or employment exams, 218/560 (38%) consented and completed a web survey or personal interview between 8/20/20 − 8/23/21. Patients provided social needs information using the Accountable Care Communities Screening Tool. For the primary outcome, patients were asked, “Would you be comfortable having these kinds of needs included in your health record (also known as your medical record or chart)?”

Analyses

Regression models were estimated to assess correlates of patient comfort with including social needs information in medical records.

Key results

The median age was 45, 68.8% were female, and 78% were white. Median income was $75,000 and 84% reported education beyond high school. Social need ranged from 5.5% (utilities) to 26.6% (housing), and nonwhite and gender-nonconforming patients reported greater need. 20% reported “some” or “complete” discomfort with social needs information included in the EHR. Adjusting for age, gender, race, education, trust, and self-rated health, each additional reported social need significantly increased discomfort with the EHR for documenting social needs.

Conclusions

People with greater social needs were more wary of having this information placed in the EHR. This is a concerning finding, since one rationale for collecting social need data is to use this information (presumably in the EHR) for addressing needs.

social needs

EHR

screening

social determinants of health

primary care

Recognizing the significance of the social determinants of health (SDOH), theCenters for Medicare and Medicaid Services has requested comment on two quality measures related to social risk or need. These include the rate of screening for social needs (% beneficiaries, age 18 years and older, screened for food insecurity, housing instability, transportation problems, utility help needs, and interpersonal safety) and the screen-positive rate.¹ If approved, the two measures may be included in the Merit-based Incentive Payment System and Hospital Inpatient Quality Reporting Program, which will encourage standardization in reporting and provide important incentives for screening. CMS has adopted the Accountable Health Communities (AHC) Health-Related Social Needs (HRSN) Screening Tool for this purpose.²

CMS seeks to determine if addressing these health-related social factors has beneficial effects on health outcomes and health care costs.^3,4 This effort is reasonable in light of increasing evidence that patient-reported social needs (e.g., housing insecurity) reflect global social risks (e.g., poverty) that affect health and utilization of health services.⁵ Social needs are more common among vulnerable populations (for example, patients with low income or low health literacy), as well as in patients with chronic diseases and mental health conditions.⁶ Addressing social determinants as part of a expanded continuum of medical and human services should in principle improve patient health.

The prevalence of social needs in adult primary care is high. A large Kaiser Permanente Northwest study conducted in 2017-19 reported a prevalence of 24% for at least one social need.⁷ More than half of patients reporting such needs also sought help to address the need, consistent with literature showing that 40–60% of people who report an unmet need agree to participate in patient navigation or other social needs programs.⁸ Among members of the Kaiser Permanante health system who received federally subsized health insurance, 48% reported at least one social risk factor.⁹ Across 19 ambulatory sites within a health system in the Bronx, NY, 20% of patients reported one or more social needs or risks.¹⁰ A review found that 5-43% of participants screened in clinical settings had needs related to housing stability, 6-41% food-related needs, and 47-89% general needs related to financial insecurity.⁸

These studies mix social needs (e.g., not enough food at the end of the month) and social risks (e.g., not enough money to meet unexpected expenses, an indicator of more general financial vulnerabilty). The most common social risks include limited English proficiency, less than high school education, lack of insurance, high levels of stress, and unemployment.¹¹ By contrast, the most prevalent social needs are typically housing instability followed by food insecurity.^7,9 Distinguishing between the two is important because the latter may be effectively addressed in the health care setting if identified and addressed with appropriate social services.

Patients are willing to answer questions about social risk and needs. About three-quarters of patients are willing to answer questions about income,¹² an important indicator of social risk. Patients are mostly willing to answer questions about social needs but with varying levels of comfort. One study reported 81-95% completion of social needs screening questions, with 85% agreeing that a health system should ask patients about these needs.¹³ Patients reporting a greater number of social needs were more likely to agree that social needs affect health and endorse clinician efforts to elicit needs and address them.

Yet support for collecting such information does not rule out discomfort with EHR documentation of social needs. A study conducted by the Social Interventions Research & Evaluation Network (SIREN), which included nine primary care clinics and four emergency departments in nine states, found high rates of screening acceptability (79%) but less support for including this information in electronic health records (65%).¹⁴ The authors conclude that “lack of patient acceptability should not be a major barrier to implementation of social risk screening” but also note that 19% reported being “very” or “somewhat uncomfortable” with EHR documentation of needs. Acceptability of EHR documentation was as low as 54% among subgroups of patients.

These findings suggest the need for a closer look at patient attitudes toward social need information and its documentation in the patient health record. For this reason, we investigated patient social needs and attitudes toward EHR documentation of these needs in a primary care setting that covers a broad spectrum of patients.

Sample

Between 8/20/20-8/23/21, we approached all scheduled patients seen in a single, hospital-based primary care clinic for annual or employment examinations to ascertain interest in the study. Patients were approached by a medical assistant or physician who described the study using a prepared script. Potential participants were asked during a telemedicine or in-person appointment if they would be interested in participating in a study about “what it takes to be healthy and the role of housing, food security, medical transportation, utilities (heat, light, water), and personal safety.” Patients expressing interest provided contact information. The research team then followed up by telephone and email contact and obtained consent. The study was approved by the University of Pittsburgh Human Research Protections Office.

The clinic is based at a university hospital and serves a diverse patient population, including unversity faculty and staff, hospital employees, and community members. It includes a residency program and sees patients with a variety of insurance coverage, including Medicaid.

Design

Participants were invited to complete the AHC Health-Related Social Needs Screening (HRSN) a single time within 1-2 weeks of their clinic visits. We used the expanded questionnaire developed by the Social Interventions Research & Evaluation Network (SIREN).¹⁴ Patients were paired with research assistants who followed up with potential participants to encourage completion of social needs screening either through an Internet survey sent via email or by telephone interview. Patient responses were de-identified and not linked to the EHR.

Measures

To measure social needs, patients completed the Accountable Health Communities (AHC) Health-Related Social Needs Screening Tool.⁴ CMS developed the 10-item screening tool to identify patient needs that can be addressed through community services. The measure assesses five domains (housing instability, food insecurity, transportation difficulties, utility assistance needs, and interpersonal safety).

The AHC HRSN can be scored in a variety of ways to indicate social needs. We used the following thresholds: Unstable housing: 1+ problem (pests, mold, lead, heat, oven, no smoke detector, water leak) or unstable housing (anxious about losing home or homeless). Food insecurity: Sometimes/often run out of food or food does not last until end of month. Transportation need: Lack of reliable transportation. Intermittent utilities: utilities shut off in past year. Threat to safety: Worried about safety, threatened with harm, or sometimes/often screamed at or cursed. We computed a sum for the number of social needs reported (range, 0-5).

We included a number of additional measures used in the SIREN study.¹⁴ These elicit additional information on the five domains of social need as well as patient experience answering these questions: have they been asked the questions in the prior 12 months, have they received assistance with any of the needs, do they think it is appropriate to be asked such questions, and “would you be comfortable having these kinds of needs included in your health records (also known as your medical record or chart).” Other questions elicited a rating of health, trust in your health care provider (1-10 scale), and “where you see yourself in relation to others in the United States” (1, worst off-10, very top). Patients were also asked if they experienced disrespect from health care providers using the SIREN 6-point index. Finally, patients reported sociodemographic information, including income categories (13-point scale ranging from <$5,000 to >=$150,000). The questionnaire is available as a supplement to the SIREN study: https://www.ajpmonline.org/cms/10.1016/j.amepre.2019.07.010/attachment/f00500c1-4267-4be7-b089-f01328d38471/mmc1.pdf.

Analyses

Analyses were mainly descriptive and sought to characterize the level and type of social needs reported by the sample along with additional indicators, including whether patients were asked about each need in clinic visits, how comfortable they were with this line of questioning, whether they wanted assistance with the need, and whether they received assistance.

We compared means by t-test and computed Pearson and Spearman correlations. To assess the relationship between social needs and comfort with recording such information in the EHR, we estimated linear and ordinal regression models that adjusted for these factors to identify how much comfort with EHR documentation changed with each additional reported social need. Analyses were conducted using STATA/SE 15.1.

Of 1868 patients who were seen at the clinic for annual or employment exams over 12 months, 560 (30%) provided contact information after they were approached by a physician or medical assistant during the appointment (Fig. 1). Of these patients, 218 (39%) provided informed consent and completed the AHC HRSN by Internet survey or personal interview. 66% of patients completed the survey independently using the Internet link. Patients were seen by a total of 29 attending physicians and 20 residents. Despite the potentially sensitive nature of the interview and heavy use of a self-administered Internet questionnaire, the proportion with missing data was low. In the multiple regression analysis reported below, complete data were available for 202 (92.7%) respondents. We did not include income in the regression model because 15.6% did not answer the question.

Participants reporting social needs were asked if they would like the research team to contact the clinic social work team on their behalf. 4.1% (19/218) requested this help and were referred to the social work team.

The median age of patients was 45, 68.8% were female, and 78% were white. The median income was $75,000, and 84% reported education beyond high school. Comparison to all patients seen in the clinic over the study time period suggests that our sample was representative of the clinic population as a whole, though less likely to include minorities. Among the full set of patients seen in the clinic during this period, the median age was 45, 68.3% were female, and 69.4% were white.

Prevalence and Correlates of Social Needs

Table 1 summarizes social needs reported by the patient sample. Of the five social needs, participants mentioned problems with housing (26.6%) and interpersonal threats (20.2%) most often. Food insecurity (15.6%) and difficulties with transportation (12.9%) followed. Problems with utilities were least common, with 5.5% reporting need.

Table 1

Social Need Indicators
Need	Reporting need, %	Of patients reporting need:
Need	Reporting need, %	Asked in clinic, 12-mo %	Discomfort when asked, %	Want assistance, %	Received assistance, %
Housing	26.6	19.6	7.6	17.9	3.6
Food	15.6	20.6	3.1	47.1	11.8
Transportation	12.9	21.4	3.9	32.1	7.1
Utilities	5.5	16.7	0.0	41.7	16.7
Interpersonal Safety	20.2	35.7	5.1	4.9	0.0

Unstable housing: 1+ problem (pests, mold, lead, heat, oven, smoke detector, water leak) or unstable housing (anxious about losing home or homeless)

Food insecurity: Sometimes/often run out of food or food does not last until end of month

Transportation need: Lack of reliable transportation

Intermittent utilities: utilities shut off in past year

Threat to safety: Worried about safety, threatened with harm, or sometimes/often screamed at or cursed

The number of social needs ranged from 0 (57.8%) to 5 (1.8%) and differed by race and gender group. Non-white participants reported a greater mean number of needs (1.4 vs. 0.68, p < .01). People reporting non-conforming gender status (n = 12) reported a greater number of needs (1.7) than males (0.5, n = 56) and females (0.85), p < .01. Poorer health was associated with greater social need. The mean number (SD) of social needs among people reporting excellent, very good, or good health (n = 181) was 0.6 (1.0) compared to 1.8 (1.5) among people reporting fair or poor health (n = 37), p < .0001.

The number of social needs was related to socioeconomic status. Correlations were as high as -0.53 for income and − 0.41 for the 10-point “best-off/worst-off” rating for SES ladder. Older age (r= -0.27) and greater education (r= -0.32) were associated with fewer social needs. Finally, perceived disrespect in the clinic (r = 0.38) and lower trust with health care providers (r= -0.30) were associated with greater needs. None of the SES indictors or measures of patient-physician relationship were significantly correlated with whether clinic staff asked about needs (r= -0.18-0.05).

Patients reporting a social need were asked additional questions about their comfort with questioning and support in addressing the need. Among patients reporting a social need in this encounter, 16.7–35.7% reported that clinic staff had asked about needs in contacts over the prior 12 months. Questions about interpersonal violence were most common. Patients overall were comfortable with such questioning; less than 7.6% reported discomfort with these questions. Requests for assistance with social needs were also common. Among people reporting needs, over 40% requested assistance to address food insecurity or access to utilities. Notably, despite its high prevalence (20.2%), only 4.9% reported need for assistance to address interpersonal violence, and none reported receiving help to address the need. Across the five needs, receiving assistance with utilities was most common, but even here only 16.7% reported any such help.

Discomfort with Social Needs Information Included in the Medical Record

In this primary care patient sample, 20% (43/215) reported they were “somewhat” or “completely uncomfortable” having social needs information included in their medical record. 44.7% were “completely comfortable” with inclusion of social needs information. We examined the relationship between level of comfort and sociodemographic, health, patient-physician relationship, and social needs measures by estimating a multiple linear regression model (Table 2). In this adjusted model, number of social needs and level of trust in the patient-physician relationship were the only significant correlates. With each additional social need, discomfort increased by 0.19 (p < .05) on the 5-point rating. With each additional point of greater trust on the 10-point rating, discomfort declined by 0.16 (p < .01).

Table 2

Correlates of Discomfort with Social Needs Reported in EHR
Correlate	Coefficient (SE)	95% Confidence Interval
Age	.09 (.05)	− .02, .19
Gender (male)	.15 (.16)	− .16, .47
Race (white)	.22 (.24)	− .24, .69
Education	.02 (.14)	− .25, .28
Self-rated health	− .08 (.10)	− .28, .13
Trust	− .16 (.06)**	− .28, − .04
Social needs (sum)	.19 (.09)*	.02, .37
Constant	3.02 (.92)***	1.21, 4.83
Model F, 2.52 (201 df), p = .017, Adj R² = .05; n = 202
Outcome: Discomfort (1 = completely comfortable to 5 = completely uncomfortable)
Correlates: age (7 categories, from 18–24 to 75+); education (high school, college, post-college); self-rated health (5 categories, from excellent to poor); trust (1–10); social needs (count, 0–5)

A simpler descriptive approach shows that discomfort with EHR documentation was not limited to people reporting a greater number of social needs. Among people reporting 0–1 social need, 15.4% (26/169) were uncomfortable or very uncomfortable with EHR documentation. Among people reporting 2–5 social needs, the proportion increased to 37.0% (17/46), p = .001.

People with greater social needs were more wary of having this information placed in the EHR. This effect persisted even when controlling for sociodemographic status, general health, and level of trust in patient-physician relationships. This is a concerning finding, since one rationale for collecting social need data is to use this information, presumably tracked in the EHR, for addressing needs.

The prevalence of social needs in this sample was similar to reports from other adult primary care patients. For example, in a Kaiser study, in which half the sample were covered through Medicare, 13.3% reported housing instability and 11.1% food insecurity. Over half of these patients wanted help to address the need.⁷ Comparison of the prevalence of social needs across samples is challenging: “there is no consensus on how or how often patients should be screened for social needs, or which patients should be screened, in which settings, and by whom.”⁸ Still, our finding that 20% of patients were very or somewhat uncomfortable with an EHR record of their social needs is in accord with prior SIREN research using a large sample across diverse clinical settings (19%).¹⁴

Why are patients uncomfortable with EHR documentation of their social needs? Qualitative research provides some insight. A subsample from the SIREN study were given the opportunity to describe their discomfort with EHR documentation of social needs. Some patients were concerned about privacy and feared social needs information would be shared outside the health care team. Others doubted if documenting this information would actually do any good: “Why? Why should I have it in my medical chart? It’s not helping me in what I’m coming in here for.”¹⁵ Discomfort with an EHR record of social needs reflects concern for privacy and fear of stigma but perhaps also low confidence that health care providers can actually use this information to help patients. Other patients may already receive help from other sources and may decline for that reason.⁹

What would it take to make patients feel more comfortable with EHR documentation of social needs? Should we seek to increase this comfort level? Without adequate ways of helping patients find assistance, and without a way to use this information to deliver more effective care, the justification for collecting and documenting social needs in primary care is questionable. But two trends suggest the value of direct elicitation of social needs information from patients.

First, studies continue to show the value of eliciting social needs for outcomes important for patients, such as providing transportation to reduce missed medical appointments,¹⁶ providing housing to reduce COVID transmission,¹⁷ changing landlord behavior to reduce home health hazards,¹⁸ and using food prescriptions to address nutritional deficits.¹⁹ Second, health care organizations and insurance plans are already acquiring social needs data by interrogating EHR records and geocoded public and proprietary databases. New efforts have also harnessed natural language processing of clinical notes in the EHR to identify social needs. In a Kaiser Permanante study, a comparison of housing and transportation needs identified by natural language processing showed moderate agreement with patient self-reported social needs.²⁰ Thus, combining direct elicitation of social needs and automated data mining efforts will likely give a fuller picture of the significance of social needs in health.

Limitations of this research include a relatively small sample, use of a single clinic, and possible effects of the COVID pandemic on medical care and trust in health care professionals more generally. Still, our findings suggest that patients with greater social needs were less comfortable with EHR documentation of these needs, and that in a subset of patients with no or only minor needs, some 15%, were also uncomfortable with this use of the EHR. Some of this discomfort may come from lack of familiarity with the EHR more generally. We have noted that patients are often surprised to hear what is recorded in their medical record. Patients may not be aware of the many other kinds of information routinely documented in the EHR, such as information about substance abuse, mental health diagnoses, number of sexual partners, sex of sexual partners, or hepatitis C status. Health care professionals ask about many potentially stigmatizing diagnoses and behaviors. It is not clear that “comfort” with EHR documentation of this information would be different from that of social needs.

Finally, given patient reticence about EHR documentation of social needs, it may be valuable to conduct a randomized controlled trial comparing direct elicitation of social needs with EHR-defined social needs to assess ways health care teams use this information and potential differences in patient outcomes. While challenging, it would allow a definitive test of whether patient articulation of needs offers information not captured with less obtrusive measures, and whether this information can be used more effectively to address patient social needs.

Ethics approval and consent to participate

The research was reviewed by the University of Pittsburgh Human Research Protections Office and is registered at clinicaltrials.org.

Consent for publication

All participants provided informed consent for the research.

Availability of data and material

Deidentified data will be made available to qualified researchers upon submission of an analytic plan and request to the authors.

Competing interests

None of the authors report conflicts of interest related to the research.

Funding

Research supported by the Health Policy Institute, University of Pittsburgh

Authors' contributions

Drafting of research protocol (SA, PM, GF, JH, TB), writing (SA, PM, GF, JH, TB), analyses (SA, JH), review and revision for scholarly content (SA, PM, GF, JH, TB, AJ), funding (AJ). All authors have agreed to submission for publication.

Acknowledgments

The authors gratefully acknowledge study research assistants Lisa George, Amanda Goss, Ayodele Ogunmola, Susan Garrison, Jennifer King, and Molly Ennis.

MUC 2021-134 and 136, CMS List of Measures Under Consideration for December 1, 2021: https://www.cms.gov/files/document/measures-under-consideration-list-2021-report.pdf. Accessed April 11, 2022.
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Do patients want clinicians to ask about social needs and include this information in their medical record?

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Abstract

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Background

Methods

Results

Prevalence and Correlates of Social Needs

Discomfort with Social Needs Information Included in the Medical Record

Discussion

Declarations

References

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