National Cancer Institute–Funded Social Risk Research in Cancer Care Delivery: Opportunities for Future Research

Abstract

Background

Cancer patients and survivors with food insecurity, housing instability, and transportation-related barriers face challenges in access and utilization of quality cancer care thereby adversely impacting their health outcomes. This portfolio analysis synthesized and described National Cancer Institute (NCI)–supported social risk research focused on assessing food insecurity, housing instability, and transportation-related barriers among individuals diagnosed with cancer.

Methods

We conducted a query using the National Institutes of Health iSearch tool to identify NCI-awarded extramural research and training grants (2010-2022). Grant abstracts, specific aims, and research strategies were coded for research characteristics, study population, and outcomes.

Results

Of the 30 grants included in this analysis, most assessed transportation-related barriers as patient-level social needs. Grants focused on community-level social risks, food insecurity, and housing instability were largely absent. Most grants included activities that identified the presence of social risks and/or needs (n = 24), connected patients to social care resources (n = 10), and engaged community members or organizations to inform the research study (n = 9). Of the grants, 18 focused on a single type of cancer, primarily breast cancer, and more than half focused on the treatment and survivorship phases.

Conclusions

In the last decade, there has been limited NCI-funded social risk research grants focused on food insecurity and housing instability. Findings highlight opportunities for future cancer care delivery research, including community and health system–level approaches that integrate social and clinical care to address social risks and social needs. Such efforts can help improve outcomes of populations that experience cancer health and health-care disparities.

Food insecurity, housing instability, and transportation-related barriers are among the most common unmet social needs experienced by individuals diagnosed with cancer (1-5). Unmet needs occur when individuals lack basic resources, often arising from upstream systemic and structural conditions that adversely affect health, defined as social risks (6,7). Both social risks and social needs create barriers to access, utilization, and timely delivery of quality cancer care and can lead to adverse health outcomes (1,3,8). For example, cancer patients who experience food insecurity are more likely to postpone seeking medical care, miss medical appointments, receive nonguideline concordant treatments, and experience lower health-related quality of life (3,5,9,10). At the community level, individuals residing in “food deserts,” or neighborhoods with high county-level rates of food insecurity, are more likely to have late-stage cancer diagnoses and lower survival (11,12). Understanding and addressing social risks and social needs within cancer care delivery settings provide an opportunity to address pervasive inequities in cancer outcomes.

A report by the National Academies of Sciences, Engineering, and Medicine (NASEM) proposed the Social and Healthcare Integration Framework, which identifies 5 system-level activities to strengthen social and clinical care integration for patients who experience social needs (13). The 5 interrelated activities—awareness, assistance, adjustment, alignment, and advocacy—provide a framework for developing strategies within and across care delivery systems to improve patient outcomes. To date, care delivery research and quality improvement efforts using this framework have been implemented in acute and primary care settings, with most focused on identifying patients’ social needs (ie, awareness) and connecting patients to social care resources (assistance) (14). However, little is known about the social risks and social needs research in cancer care delivery.

The National Cancer Institute (NCI) is addressing cancer health disparities in numerous ways, including stimulating research that identifies and addresses the mechanisms contributing to the unequal burden of cancer through the development of funding opportunities (15). To better understand and inform the portfolio of NCI-funded social risk research, we applied the NASEM’s Social and Healthcare Integration Framework to identify applications focused on food insecurity, housing instability, and transportation-related barriers in populations diagnosed with cancer and to describe grant activities within the context of the 5 NASEM framework domains. Findings from this analysis can contribute to identifying opportunities and areas of growth in the NCI portfolio for social risks and social needs research within cancer care delivery and build new, sustainable cancer equity research capacity.

Methods

Data Source and Search Criteria

We used the National Institutes of Health iSearch tool to identify awarded NCI extramural research (R01, R21, R03, P01, U01) and training (F31, F99, K01, K07, K08, K22, K99) grants from January 2010 to April 2022. We developed a search strategy using 3 domains: cancer, care delivery, and social determinants of health (SDOH) (see Supplementary Table 1, available online). Search terms were informed by associated Medical Subject Headings terms from the National Library of Medicine and the PhenX SDOH Toolkit (16,17). This search strategy was applied to the title, abstract, and specific aims of the grant.

A total of 133 awarded grants were identified for review (102 research grants and 31 training grants). Two members (JS and BA) of the team reviewed the grant’s specific aims and research strategy for study inclusion using the following criteria: 1) the grant was focused on cancer (postdiagnosis) and 2) at least 1 research aim focused on food insecurity, housing instability, and/or transportation-related barriers (see Figure 1). Grants considered outside the scope of this analysis (eg, grants that focused on food insecurity solely from a nutrition or intake perspective and not on food security as a social risk and/or social need) were excluded. Disagreements were resolved by consensus.

Figure 1.

Flow diagram for selection of National Cancer Institute (NCI)–funded social risk research grants.

Data Extraction

We created a codebook for the systematic extraction of information from funded grants (18). One coder (JS) extracted data on the characteristics of the grant (year awarded, grant mechanism, funding opportunity announcement [FOA], type of social risks and/or needs, NASEM activities), study population (cancer type, age, cancer care continuum phase, and racial and ethnic composition), and research methods and outcomes (study design, conceptual model, methodologies, measures and level of measurement) from the title, abstract, specific aims, and research strategy. All grants were coded into 1 of 2 study designs: 1) observational studies aimed at understanding or describing the social risks and/or needs experienced by individuals diagnosed with cancer and their association with cancer-related outcomes or 2) interventional studies that develop, evaluate, or test strategies.

Grants were also coded for 1 or more of the Social and Healthcare Integration Framework’s 5 activities (awareness, adjustment, assistance, alignment, and advocacy) (13). For the purposes of characterizing NCI-funded grants, we operationalized the 5 activities as occurring within the context of research. For example, advocacy-related activities included working with and engaging community members and organizations in developing and conducting research activities (eg, developing a community advisory board to guide the research aims). We reported descriptive statistics (ie, frequencies and percentages) to describe grant characteristics and activities.

Results

A total of 30 grants met inclusion criteria, 80.0% were research, and 20.0% were training grants (Table 1). There was an increase in the number of grants funded by NCI from 1 funded grant in 2010 to 7 in 2021. Eleven grants were awarded since January 2021, and most (n = 17, 56.7%) were funded through the R01 grant mechanism. Grants were funded under several FOAs, including under targeted FOAs (n = 11, 36.7%), investigator initiated FOAs (n = 13, 43.3%), and mentored training FOAs (n = 6, 20.0%).

Table 1.

Characteristics of National Cancer Institute–funded grants focused on food insecurity, housing-related issues, or transportation barriers experienced by individuals diagnosed with cancer (n = 30)

Characteristics	No. (%)
Year awarded
2010-2015	3 (10.0)
2016-2020	16 (53.3)
2021-2022	11 (36.7)
Grant mechanism
R01	17 (56.7)
R21	3 (10.0)
R03	1 (3.3)
P01	0 (0)
U01	3 (10.0)
Training (K01, K07, K08)	6 (20.0)
Funding opportunity announcement (FOA) type
Targeted FOAs	11 (36.7)
Investigator initiated FOA	13 (43.3)
Mentored training FOA	6 (20.0)

Grant Characteristics Related to Social Risk and Need and Level of Focus

Most (n = 21, 70%) grants focused on 1 social risk and/or need (Table 2). Transportation-related barriers were the most common social risk and/or need assessed, either alone (n = 14, 47%) or concurrently with food insecurity and/or housing instability (n = 8, 27%). Most (n = 23, 76.7%) grants collected or assessed data from a single level of influence, primarily individual-level social needs. Grants assessing community-level social risks created new datasets (ie, cohorts) or linked datasets to assess or validate community-level measures, such as food environments, poor housing or homelessness, and/or limited access to private or public transportation, and their impact on cancer outcomes. Seven (23.3%) grants examined community-level social risks and patient social needs, such as using multilevel modeling to assess the impact of the availability of transportation resources in the patient’s community (social risk) and the patient’s experience of transportation-related barriers (social needs) on patient outcomes. Table 2 presents grant characteristics related to type of social risks and/or needs and level of focus by type of study (ie, observational vs interventional).

Table 2.

Research study characteristics of National Cancer Institute–funded grants focused on food insecurity, housing-related issues, or transportation barriers experienced by individuals diagnosed with cancer

Study characteristics	Total, No. (%)	Observational, No. (%)	Interventional, No. (%)
	(n = 30)	(n = 17)	(n = 13)
Social risks and needs focus
Food insecurity only	1 (3.3)	0 (0)	1 (7.7)
Housing instability only	6 (20.0)	6 (35.3)	0 (0)
Transportation barriers only	14 (46.7)	6 (35.3)	7 (53.8)
2 or more social risks and needs	9 (30.0)	4 (23.5)	5 (38.5)
Level of focus
Individual-level social needs only	18 (60.0)	7 (41.2)	11 (84.6)
Community or population-level social risks only	5 (16.7)	5 (29.4)	0 (0)
Individual- and community-level social needs and risks	7 (23.3)	5 (29.4)	2 (15.4)
Cancer type
Single cancer type	18 (60.0)	13 (76.5)	5 (38.5)
Breast	10 (33.3)	7 (41.2)	3 (23.1)
Colorectal	1 (3.3)	1 (5.9)	0 (0)
Gynecological cancers	1 (3.3)	1 (5.9)	0 (0)
Lung	1 (3.3)	0 (0)	1 (7.7)
Prostate	1 (3.3)	1 (5.9)	0 (0)
Other	4 (13.3)	3 (17.6)	1 (7.7)
Multiple cancers/Not specified	12 (40.0)	4 (23.5)	8 (61.5)
Cancer continuum phasea
Diagnosis	8 (26.7)	5 (29.4)	3 (23.1)
Treatment	17 (56.7)	9 (52.9)	8 (61.5)
Survivorship	12 (40.0)	9 (52.9)	3 (23.1)
End-of-life	3 (10.0)	0 (0)	3 (23.1)
Age, y
Children/Pediatrics (younger than 15)	3 (10.0)	2 (11.8)	1 (7.7)
Adolescent/Young adults only (15-39)	0 (0)	0 (0)	0 (0)
Adults (18 and older)	27 (90.0)	15 (88.2)	12 (92.3)
Middle aged/Adult only (18-64)	0 (0)	0 (0)	0 (0)
Older adults only (65 and older)	0 (0)	0 (0)	0 (0)
Focused on disparity populationa
Physically disabled	0 (0)	0 (0)	0 (0)
Racial and ethnic minority populations	17 (56.7)	12 (70.6)	5 (38.5)
Sexual and gender minority populations	0 (0)	0 (0)	0 (0)
Socioeconomically disadvantaged	7 (23.3)	4 (23.5)	3 (23.1)
Underserved geographically rural	5 (16.7)	2 (11.8)	3 (23.1)
Not specified	7 (23.3)	3 (17.6)	4 (30.8)
Racial-ethnic minority population focusa
African American and Black	12 (40.0)	8 (47.1)	4 (30.8)
American Indian and Alaska Native	1 (3.3)	1 (5.9)	0 (0)
Asian	1 (3.3)	1 (5.9)	0 (0)
Hispanic and Latino	1 (3.3)	1 (5.9)	0 (0)
Native Hawaiian and Pacific Islander	0 (0)	0 (0)	0 (0)
Not specified	16 (3.3)	7 (41.2)	9 (69.2)
Applied theoretical framework or presented conceptual model	23 (76.7)	11 (64.7)	12 (92.3)
Level at which outcomes were assesseda
Patient	29 (96.7)	17 (100.0)	12 (92.3)
Caregiver	7 (23.3)	2 (11.8)	5 (38.5)
Provider	5 (16.7)	1 (5.9)	4 (30.8)
Organization or health system	3 (10.0)	0 (0)	3 (23.1)
Community	0 (0)	0 (0)	0 (0)

a

Categories are not mutually exclusive, and sum of cells may equal more than 100%.

Grant Activities Related to Integrating Social and Clinical Care

The most common NASEM activity was awareness, with 24 (80.0%) grants focusing on identifying the presence of food insecurity, housing instability, or transportation barriers among their cancer populations. Four grants conducted adjustment-related activities aimed at altering care or improving health-care delivery processes for individuals diagnosed with cancer who experience food insecurity, housing instability, and/or transportation-related barriers. Ten grants, all of which were interventional, included assistance-related activities to connect and/or refer cancer patients and survivors to social care resources. Two grants had alignment-related activities that identified existing social care resources in the communities, and 9 grants described partnering with and engaging community members or organizations to design the research study, recruit patients, provide additional social care, deliver the intervention, identify best practices for research dissemination, and/or identify next research steps (advocacy). Grant activities related to integrating social and cancer care by study design and social risk and/or need are presented in Figure 2. Table 3 presents examples of grant activities by social risk and/or need and level of focus (ie, community-level social risk vs patient-level social need). Grants that assessed a social risk and/or need were primarily observational grants, and grants that implemented an activity were interventional.

Figure 2.

Grant activities related to integrating social and cancer care by research study design and social risk and/or need. A) Observational grant activities related to integrating social and cancer care by research study design and social risk and/or need. B) Interventional grant activities related to integrating social and cancer care by research study design and social risk and/or need. ^aSum of activities equals more than the total number of observational (n = 17) and interventional grants (n = 13) because some grants focused on more than 1 social risk and/or need.

Table 3.

Examples of cancer research activities by level of focus and type of social risk and/or need

Social risk or need	Patient-level social needs	Community-level social risks
Food insecurity	Assess cancer patients having less money to spend on food since starting cancer treatment (awareness)	Assess community food environment of where cancer patients reside (eg, availability of farmers markers/food deserts) (awareness)
	Provide food voucher, home grocery delivery, or hospital-based food pantry to patients with social need (assistance)	Train/educate navigators on the availability (or lack of) healthy food options in patients’ neighborhoods (alignment)
		Work with state food bank to create pantries within cancer centers (advocacy)
Housing instability	Assess patient residential relocation during cancer treatment (awareness)	Assess neighborhood housing trends (awareness)
	Assess prevalence of refinancing home/second mortgage, selling home among cancer survivors (awareness)
Transportation barriers	Implement patient navigation to arrange transportation to cancer-related care (assistance)	Assess travel distance to care for cancer patients living in certain neighborhoods (eg, limited access to public transportation) (awareness)
	Implement telehealth interventions for rural cancer patients who experience long-distance travel to care (adjustment)	Assess percentage of households in a neighborhood with no vehicles (awareness)

Study Population

The majority (n = 18, 60.0%) of grants focused on a single type of cancer, primarily breast cancer (Table 2). Other cancers included head and neck cancers, acute lymphoblastic leukemia, and kidney cancer. Grants assessing multiple cancers included a combination of lung, breast, colorectal, cervical, prostate, and endometrial cancer. Most grants assessed social risks or needs of patients undergoing cancer treatment and/or in the posttreatment survivorship phase of the cancer control continuum.

Almost all grants (n = 27, 90.0%) focused on adult cancer populations (Table 2). More than 75% of the grants focused on 1 or more populations that experience health disparities: racial and ethnic minority populations (n = 17, 56.7%), socioeconomically disadvantaged (n = 7, 23.3%), and geographically rural (n = 5, 16.7%). Grants that focused on racial and ethnic minority populations were primarily in African American cancer populations (n = 12, 40.0%).

Research Study Characteristics

A total of 17 (56.6%) grants were observational studies, and 13 (43.3%) grants tested interventions aimed at mitigating the effects of food insecurity, housing instability, and/or transportation-related barriers experienced by individuals diagnosed with cancer (Table 2).

Observational Grants

Among the 17 observational studies, 11 grants presented a conceptual model or used theoretical frameworks to understand the mechanisms through which social risks and social needs impact cancer-related outcomes. These frameworks included the Cells-to-Society model, Andersen’s Behavioral Model of Health Services Use, Behavioral Models of Cancer Stress and Disease Outcomes, Foster-Fisman’s Framework for Systems Change, and Grounded Theory. A variety of data sources were used to collect information on social risks and social needs, including surveys, interviews, electronic and paper medical records, administrative hospital data, census data, and cancer registry data. Studies used various approaches for collecting patient-level data, including in-person across various types of locations (eg, home, cancer centers) and over the phone. Two observational grants focused on collecting quantitative data for the development of a cohort and/or validation of measures. Most observational grants (n = 15, 88.2%) collected measures of food insecurity, housing instability, or transportation-related barriers at a single time point.

Interventional Grants

Among the 13 interventional grants, 12 presented a conceptual model or applied a research framework to guide the study aims, such as the World Health Organizations Commission of Social Determinants of Health conceptual framework, Promoting Action on Research Implementation in Health Services, and the Consolidated Framework for Implementation Research. Three grants used a health-care delivery model (ie, Chronic Care Model) to guide the intervention development. Interventions were conducted within diverse health-care settings, including community oncology clinics, rural oncology practices, and primary care settings such as federally qualified health-care clinics and rural health clinics. Ten interventional grants used health information technology (IT), with most using electronic medical records to collect and manage study data and to refer study participants to appropriate social care resources; 5 grants evaluated health IT use as part of the study and/or leveraged existing telehealth capabilities to implement the intervention. Frequency and duration of intervention activities, such as patient navigation sessions or providing social services, varied from monthly over 6 months, once every 3 months, and several times within 6 months after study initiation depending on patient needs.

Outcomes Measured

Most (n = 29, 96.7%) grants assessed patient-level outcomes such as receipt of treatment and cancer surveillance procedures, patient-reported clinical outcomes (eg, physical function, fatigue, anxiety, depression), knowledge, self-efficacy, patient satisfaction, health-related quality of life, disease progression, recurrence, and survival or mortality (Table 2). Few grants assessed caregiver (n = 7, 23.3%), provider (n = 5, 16.7%), or organizational outcomes (n = 3, 10.5%). None assessed outcomes at the community level. All 13 interventional grants conducted intervention evaluations by assessing at least 1 of the following program implementation and evaluation dimensions: retention, feasibility, acceptability, fidelity, barriers for intervention implementation, sustainability, or costs.

Discussion

Over the past 10 years, the number of awarded NCI research grants focused on food insecurity, housing instability, or transportation-related barriers among individuals diagnosed with cancer increased from 1 in 2010 to 7 in 2021. Although this increase is encouraging, we found several gaps in the current portfolio that point to opportunities for cancer care delivery research.

Many grants in this analysis focused on transportation-related barriers experienced by cancer patients and survivors, and few focused on assessing food insecurity and housing instability and the mechanisms through which these social risks and/or needs impact cancer care delivery and outcomes. Additionally, most grants focused on food insecurity, housing instability, or transportation barriers as patient-level social needs. Community-engaged multilevel intervention research that assesses and addresses upstream community-level social risks and their effects on patient-level social needs may assist in generating sustainable efforts for reducing disparities in cancer-related outcomes and achieving equity in the delivery of cancer care (19–22). Observational research that uses conceptual frameworks to examine intersectionality of social identities (eg, class, race, gender) can also provide the foundation for hypothesis-driven multilevel intervention research. This research can assist us in understanding how interdependent systems of discrimination and disadvantage impact outcomes at multiple levels (ie, patient, caregiver, provider, organization or system, and community) (23-25).

Using the NASEM’s Social and Healthcare Integration Framework, we found that grants included activities related to screening for the presence of social risks or needs through validated oncology-centered tools (awareness) and/or used social care referral processes to help connect patients to social care resources (assistance). We found opportunities for research that advances knowledge on how to effectively address food insecurity, housing instability, and transportation barriers across the cancer care continuum, especially when they co-occur. Future research should assess the severity of social risks and social needs, as well as the feasibility and need to conduct longitudinal social risk assessments at multiple time points. Furthermore, although several grants applied assistance-related approaches like referrals for social care, there remains a need to more robustly understand how effective these different strategies are across diverse cancer populations, care delivery settings, and levels of influence.

In addition, only 4 grants included adjustment activities, which indicates a need for more research to identify the most appropriate frequency, timing, and type of care for cancer patients with social risks and needs. Training clinical and allied health professionals on what to do with SDOH information collected from patients is an important step for adjusting care to accommodate cancer patients’ needs, and training curricula are evolving to address these workforce needs (13,26–28). There remains a need to develop and support early and mid-career cancer researchers and care delivery workforce (29,30). Training should emphasize leveraging existing health IT infrastructures to align clinical, research, and community ecosystems. Health IT foresight research can create efficient technologies and processes needed to identify existing social care resources available in communities (alignment), optimize interoperable and sustainable strategies that foster partnerships between health-care and community organizations, and enable the development and/or redistribution of social care resources to communities and patients with greatest need (advocacy) (31,32). System-level approaches that change infrastructures and organizational cultures such as addressing biases in care delivery, funding research that supports community organizations as partners, and capacity building for social program development can assist in supporting these efforts (20,33).

Of the 30 NCI-funded grants identified, most focused on adults with breast cancer. These findings signify opportunities for understanding and addressing the impact of social risks on cancer outcomes in other cancer populations, including pediatric and adolescent and young adult patients. Most grants focused on populations experiencing cancer disparities, particularly African Americans. Future research may consider assessing and addressing social risks and needs experienced by cancer populations that are socioeconomically disadvantaged (eg, receiving Medicaid), geographically underserved (eg, rural), sexual and gender minority groups, and other racial and ethnic minority populations (ie, American Indian and Alaska Natives, Asians, Hispanics and Latinos, Native Hawaiians, and other Pacific Islanders).

Most grants assessed patient-level clinical and nonclinical outcomes, but relatively few assessed provider- or organizational-level outcomes. As cancer patients navigate their cancer care within and across health-care systems, it will be important for cancer care delivery systems to identify effective workforce models and assess the impact of food insecurity, housing instability, and transportation barriers on access to and delivery of high-quality and integrated social and clinical care. This includes assessing the complex interaction between a patient’s community and health-care delivery contexts (eg, availability and equitable distribution of social and health-care services across diverse geographical areas and communities). Lastly, although 9 grants conducted advocacy-related activities, none assessed the effectiveness of health-care organizational–community collaborations or community-level outcomes. Social risk and equity approaches are necessary for informing future capacity-building research strategies. For example, social return-on-investment analyses can be used to measure the social value added by an intervention by taking into account the impact on stakeholders and communities (34).

It is important to note the limitations of this portfolio analysis. We only included research and training grants, which may not fully capture all social risk research funded by NCI. Furthermore, this analysis was limited to food insecurity, housing instability, and transportation-related barriers experienced by individuals diagnosed with cancer. We recognize that social risks encompass other factors that impact health outcomes and contribute to disparities, including factors across the 5 SDOH domains (economic stability, access to eduation, social and community context, neighborhood and built environment, and access to quality health care) (35). Nonetheless, food insecurity, housing instability, and transportation-related barriers are among the top 5 social conditions with the greatest social and financial investment by US health-care systems (36). We also present information about the NASEM’s 5 activities within the context of research and recognize that there is variation in the level of depth of approaches within each activity that may not be fully captured in this study. Finally, we did not capture NCI-funded social risk research in the prevention phase of the cancer care continuum. Cancer prevention and early detection interventions have been shown to improve cancer outcomes, and there is room for understanding how social risks and needs impact health-care delivery and health outcomes prior to diagnosis.

This portfolio analysis provides an overview of NCI-funded cancer research focused on food insecurity, housing instability, and transportation-related barriers. We identified opportunities for future cancer care delivery research, including community and health system–level approaches that strengthen social and cancer care integration. Finally, our results underscore a need for additional investment for research that understands and addresses the role of patient social needs and community-level social risks on cancer-related outcomes across diverse populations. Supporting the development and implementation of intervention approaches that integrate social and cancer care can further promote equitable cancer care delivery and reduce cancer disparities.

Funding

Not applicable. This article was produced by employees of the US government as part of their official duties.

Notes

Role of the funder: Not applicable.

Disclosures: The authors have no disclosures.

Author contributions: Conceptualization, formal analysis, writing—original draft—JS, BA. Writing—review & editing—JS, BA, GR, JM, MD, AO, PJ.

Disclaimers: The content and views expressed are the sole responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute, National Institute on Minority Health and Health Disparities, the National Institutes of Health, or the Department of Health and Human Services.

Data Availability

The data underlying this article cannot be shared publicly due to the privacy of the information, however, specific methodology and codes used in this study are available in the article and in its supplementary material.