Yes [social needs information belongs in the chart]. I feel like that’s good to know. I feel like if it something that you need help with or anything, I feel like it should be in the chart because it’ll give you a better sense of who that person is or what type of environment they in…

– Participating parent on health-related social needs

When children go to a pediatrician appointment, caregivers need to understand the social problems that their young patients are experiencing. Are they in stable housing? Do they have access to enough food? Are they safe? 

Collecting these health-related social needs (HRSNs) benefits patients and providers, but the patient-clinician relationship involves a third key partner—the patient’s parents, guardians, or caregivers. 

Eager to learn the perspectives of parents on HRSN screening and data collection, Children’s Hospital of Philadelphia (CHOP) PolicyLab Faculty Scholar Zoe Bouchelle, LDI Senior Fellows Aditi Vasan, Chén C. Kenyon, and colleagues conducted 20 semi-structured interviews with parents of hospitalized children participating in an HRSN screening program at a prominent children’s hospital. 

The study is among the first to examine parent perspectives on International Classification of Diseases 10th Revision (ICD-10) Z codes, which provide categories to identify nonmedical factors (i.e., HRSNs) such as housing, transportation, and the presence of violence that may influence a patient’s health status.

The participating parents were all female with 55% identifying as Black or African American and 20% as Hispanic or Latino. Parents expressed comfort with sharing HRSN information with their children’s providers, but asked for more transparency around HRSN data sharing and respect of parental preferences. Many raised concerns about documentation and sharing of HRSN data that could lead to unwanted disclosures, such as those that could trigger child welfare referrals.

Most parents cited social workers and medical teams as the most appropriate recipients of HRSN data, while few parents felt comfortable with HRSN data being shared with insurers.  

According to co-investigator Vasan, understanding parent perspectives on HRSN screening is key because caregivers often have to navigate complex, inefficient systems to access the social service programs and community-based resources their families need. “The time and resources that parents and other caregivers spend figuring out how to receive Special Supplemental Nutrition Program for Women, Infants, and Children (WIC), Medicaid, or Supplemental Security Income (SSI) benefits for their children can take away from their ability to care for these children and support their health and well-being,” Vasan said. “That’s why it’s so important to design family-centered programs that assess and address families’ HRSNs in a way that is consistent with their preferences and that ensures they can receive support tailored to their needs.” 

As the U.S. health system works to reduce persistent social inequities and disparities in health outcomes, providers and insurers can build trust by providing transparency around documentation and data sharing with families.

To learn more about the study and its policy implications, we asked lead and senior authors Bouchelle and Kenyon a series of questions below.

What kinds of HRSN data might be gathered during a pediatric visit, and how are they collected?

Bouchelle: Health-related social needs are social and economic risk factors that can affect health and determine which families would like help. HRSN data collected during a child’s visit might include things like unstable housing, inadequate access to food, challenges with transportation, difficulty paying utilities, or intimate partner violence. Often, HRSN data are collected through conversations with families through a questionnaire, on paper or electronically.

What are some issues with HRSN data collection?

Bouchelle: I’ll highlight a few.

First, even though the American Academy of Pediatrics (AAP) recommends that pediatric providers routinely screen for HRSNs, no standard recommendations exist for the collection, documentation, and sharing of HRSN data. This leads to variation in practice.

Second, HRSN screening can probe sensitive areas of families’ lives. If not done in alignment with parents’ expectations, HRSN screening, documentation, and data sharing could create mistrust between families and their children’s providers.

Third, we just don’t have a lot of data examining parents’ beliefs, expectations, and preferences about how HRSN data are documented and shared. That information is important to ensure the data we collect are used to maximize benefit and minimize unintended negative consequences for families.

What inspired you to examine parents’ preferences about how HRSN data are documented and shared?

Bouchelle: Currently, there’s a lot of interest in and momentum around HRSN screening in pediatrics. Some of that enthusiasm comes from a desire to address contributors to poor health with upstream interventions. But a big chunk of it also comes from incentives from regulators and insurers, like the Centers for Medicare & Medicaid Services, the Joint Commission, and Medicaid. I worry that without understanding parents’ preferences, it could result in creating programs that check the regulators’ and payers’ boxes but do so in a way that doesn’t help families, or could even harm some of them.

What were your most important findings?

Bouchelle: One thing we found was that most parents were comfortable with the documentation of HRSN data in their child’s health record, but only if the information was used to provide them with meaningful support. This suggests that we may not want to ask these questions if we don’t have any real support to provide.

Another takeaway is that most parents felt social workers and medical teams should have access to HRSN data, but few parents felt comfortable with HRSN data being shared with their insurers. We should think long and hard about if, how, and why this information is shared with health insurers.

Some parents worry about the information being weaponized against them. What is needed to avoid that?

Bouchelle: Some parents had concerns that sharing of HRSN data may put them at risk for referrals to child protective services. This is a valid concern, and one I share with parents.

We need to be more transparent with families about why we collect this information and who will have access to it. We also need to create systems that can track if there are increases in referrals to child protective services from screening.

Where are you going next with this line of research?

Bouchelle: We’re working on a paper that will help share our team’s process of creating an HRSN screening program at CHOP. It will highlight some of the ways we’ve changed the program in response to parents’ concerns about documentation and data sharing. I hope that this will spur other institutions to critically evaluate their processes, but also share with us what they’ve learned.

How are HRSN data currently being used in pediatric settings?

Kenyon: HRSN data are not used in a uniform way. Some institutions may provide families with a link to community resources, some may provide personalized information based on social needs, while others may involve ad hoc referrals to social work or community health worker programs. The type of response depends on several factors including whether there are policies and personnel involved in implementing social needs screening, the availability of resources in the community, and whether there are staff to respond to individual families’ needs.

How can health systems be transparent around documentation and data sharing with families?

Kenyon: Health systems can invest in educating staff on how to communicate with families about documentation in health records. For institutions at which screening occurs electronically, they should consider including an introduction to the questions that states the reasons for collecting the data,  where the data will be stored, and with whom it will be shared.

Families worried about insurers accessing the data, but insurers may be the funders of the HRSN services the family needs. Are there ways to navigate this?

Kenyon: This will be challenging. Something that emerged from the interviews was that families did not understand why insurers should receive social needs information if they did not have resources to provide for the family. In other words, why did insurers need to know sensitive social information if they weren’t capable of doing anything to help? This concern may be somewhat mitigated as insurers increasingly provide support to address social needs like delivered meals, housing assistance, and transportation assistance. But it is an important consideration, particularly with government payers who are incentivizing screening for HRSNs.

What recommendations do you have for hospital leaders, insurers, and policymakers?

Kenyon: Hospital leaders who use electronic health records should consider collaborating with clinical informaticists to address potential vulnerabilities in data documentation and sharing. For payers, more work needs to be done to understand the acceptability—and effectiveness—of insurers engaging in social care interventions. Policymakers should consider incentives that reimburse not only for screening, but for successfully connecting families to relevant programs closely linked to favorable outcomes.

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The study, “Parent Perspectives on Documentation and Sharing of Health-Related Social Needs Data,” was published on March 13, 2024 in Hospital Pediatrics. Authors include Zoe Bouchelle, Stephanie G. Menko, Mishaal Yazdani, Aditi Vasan, Philip Scribano, Judy A. Shea, and Chén C. Kenyon.

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