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Addressing social needs in oncology practices: A case study of a patient-centered approach using health information technology

Part of:Integration of Social Determinants of Health with Clinical and Translational Science

Published online by Cambridge University Press:  30 September 2024

Helen M. ParsonsOpen the ORCID record for Helen M. Parsons[Opens in a new window],
David Haynes,
Anne Blaes,
Timothy R. Church,
Julia Halberg,
Steven G. Johnson and
Pinar Karaca-Mandic
Helen M. Parsons*
Affiliation:
Division of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis, MN, USAMasonic Cancer Center, Minneapolis, MN, USA
David Haynes
Affiliation:
Masonic Cancer Center, Minneapolis, MN, USAInstitute for Health Informatics, University of Minnesota, Minneapolis, MN, USAXanthosHealth, Minneapolis, MN, USA
Anne Blaes
Affiliation:
Masonic Cancer Center, Minneapolis, MN, USADivision of Hematology, Oncology and Transplantation, University of Minnesota, Minneapolis, MN, USA
Timothy R. Church
Affiliation:
Masonic Cancer Center, Minneapolis, MN, USADivision of Environmental Health Sciences, School of Public Health, University of Minnesota, Minneapolis, MN, USA
Julia Halberg
Affiliation:
XanthosHealth, Minneapolis, MN, USADivision of Environmental Health Sciences, School of Public Health, University of Minnesota, Minneapolis, MN, USACarlson School of Management, University of Minnesota, Minneapolis, MN, USA
Steven G. Johnson
Affiliation:
Masonic Cancer Center, Minneapolis, MN, USAInstitute for Health Informatics, University of Minnesota, Minneapolis, MN, USA
Pinar Karaca-Mandic
Affiliation:
XanthosHealth, Minneapolis, MN, USACarlson School of Management, University of Minnesota, Minneapolis, MN, USA
*
Corresponding author: H. M. Parsons; Email: Pars0100@umn.edu
Rights & Permissions [Opens in a new window]

Abstract

Given the dramatic growth in the financial burden of cancer care over the past decades, individuals with cancer are increasingly susceptible to developing social needs (e.g., housing instability and food insecurity) and experiencing an adverse impact of these needs on care management and health outcomes. However, resources required to connect individuals with needed social and community services typically exceed the available staffing within clinical teams. Using input from focus groups, key informant interviews, user experience/user interface testing, and a multidisciplinary community advisory board, we developed a new technology solution, ConnectedNest, which connects individuals in need to community based organizations (CBOs) that provide services through direct and/or oncology team referrals, with interfaces to support all three groups (patients, CBOs, and oncology care teams). After prototype development, we conducted usability testing, with participants noting the importance of the technology for filling a current gap in screening and connecting individuals with cancer with needed social and community services. We employ a patient-empowered approach that engages the support of an individual’s healthcare team and community organizations. Future work will examine the integration and implementation of ConnectedNest for oncology patients, oncology care teams, and cancer-focused CBOs to build capacity for effectively addressing distress in this population.

Keywords

Social determinants of healthcommunity based organizationsoncology practicespatient-centered designmobile health information technology

Information

Type
Translational Science Case Study
Information
Journal of Clinical and Translational Science , Volume 8 , Issue 1 , 2024, e139
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2024. Published by Cambridge University Press on behalf of Association for Clinical and Translational Science

Introduction

Although cancer mortality rates have declined in the US in recent decades, patients experience differential access to advances in cancer prevention, early detection, treatment, and survivorship care [Reference Siegel, Miller, Fuchs and Jemal1]. While prior research has demonstrated that multiple factors (e.g., genetic, environmental, and behavioral) contribute to cancer risk and survival after diagnosis, social needs (e.g., lack of social connection, transportation difficulties, and housing instability) largely shape the health and well-being of individuals, create health inequities, and drive a large fraction of avoidable adverse health outcomes and healthcare costs for these individuals [Reference McGinnis, Williams-Russo and Knickman2,Reference McGowan, Kramer and Teitelbaum3].

Cancer patients are at particular risk for increasing social needs given the dramatic growth in the financial burden of cancer over the past decades [Reference Yabroff, Bradley and Shih4,Reference Guy, Yabroff, Ekwueme, Rim, Li and Richardson5]. The annual cost of many new cancer drugs now exceeds $100,000 [Reference Shih, Xu, Liu and Smieliauskas6], and health insurers are increasingly shifting the cost of cancer care to patients through higher out-of-pocket costs. At the same time, providers are increasingly time- and resource-constrained to assist patients with social needs that extend beyond medical care [Reference Zettler, Feinberg, Jeune-Smith and Gajra7]. As a result, individuals with cancer continue to experience poor access to services that address these social needs, including issues with financial hardship, food and housing insecurity, and transportation difficulties, among other challenges [Reference Alcaraz, Wiedt, Daniels, Yabroff, Guerra and Wender8]. Previous research has demonstrated significant financial hardship among cancer survivors (e.g., debt, bankruptcy, and delaying care because of cost), with some studies reporting more than 50% of the population experiences financial strain [Reference Han, Zhao, Zheng, de Moor, Virgo and Yabroff9]. As a result of this increased financial strain, cancer patients are more likely to experience food insecurity compared to the general population, including problems with food running out and eating unbalanced meals [Reference Zheng, Jemal and Han10,Reference Simmons, Modesitt, Brody and Leggin11]. Financial challenges also result in reduced access to reliable transportation, a critical barrier to healthcare access for individuals with cancer, which can contribute to missed medical appointments and poorer health outcomes [Reference Syed, Gerber and Sharp12].

Traditionally, connecting individuals with resources to address social needs has fallen to patient navigators and social workers within the oncology care teams. However, resources needed to connect individuals with social and community services typically exceed available staffing of clinical teams [Reference Zettler, Feinberg, Jeune-Smith and Gajra7]. Identifying solutions to build capacity for more effectively connecting oncology patients with needed social and community resources to alleviate distress will benefit patients and providers.

Significant gaps in evidence also remain around best practices for ameliorating social needs. One method to address these needs at an individual level is to screen for social needs, and, among those with identified needs, connect individuals to supportive services through use of health information technology. In many cases, information about social needs is highly private for individuals, especially for those in vulnerable situations. An increasing concern is that collecting social needs poorly can result in trauma, stress, and even legal implications for patients at risk [Reference Butler, Morgan and Kangovi13–Reference Knowles, Khan and Palakshappa15]. As a result, effective solutions to support the National Comprehensive Cancer Network and Commission on Cancer guidelines for distress screening and the proposed policies by the Centers for Medicare and Medicaid Services to incorporate screening and identification of social needs into quality reporting programs are critically needed [Reference Riba, Donovan and Andersen16–19]. The landscape of health information technology to screen and identify resources for addressing social needs is growing, including platforms such as FindHelp [20] and Unite Us [21]. However, these platforms do not create curated, real-time resource connections for patients and often do not include a patient interface; rather, they provide a list of services. Further, these organizations are not tailored to the unique needs and experiences of cancer survivors and do not comprehensively integrate the screening and connection process across key stakeholders (e.g., oncology patients and caregivers, oncology care teams, and community based organizations [CBOs]) in a patient-centered approach.

To address this gap, our team developed an innovative electronic health record (EHR)-enabled health information technology solution to screen, assess social needs, and connect individuals who have cancer to CBOs that can address their needs with the overall goal of improving the health and psychosocial outcomes of these individuals. In this report, we describe our iterative approach leveraging user-centered participatory design techniques to first gather information from a robust set of multidisciplinary stakeholders (oncology patients and caregivers, oncology care teams, and CBOs) and use these insights to develop a new patient-centered technology, ConnectedNest.

Materials and methods

Prototype development

Stakeholder design input

We utilized a multi-stakeholder design process to develop a new technology for screening individuals with cancer and connecting them to needed services and support. This study was approved by the University of Minnesota Institutional Review Board. Results were reported according to the Consolidated Criteria for Reporting Qualitative Research guidelines (COREQ) [Reference Tong, Sainsbury and Craig22].

Focus groups and key informant interviews

In December 2021, we conducted five virtual focus groups of individuals with cancer and their caregivers across a diverse set of cancers and socioeconomic backgrounds. Participants were recruited via convenience sampling from a multispecialty academic health center in the Midwest. Participants included adults on active treatment or in survivorship as well as their caregivers (with or without the survivor) and were approached in-person at the time of a scheduled oncology visit between November and December 2021 by study staff after a warm handoff from their oncologist. All individuals who initially met eligibility criteria, did not opt out of research, and were interested based on the warm hand off from their oncologist were approached for recruitment. Participants were provided with an informational flyer containing the study purpose, eligibility criteria, and staff contact information. After confirming eligibility, focus groups were scheduled by study staff. We received verbal consent prior to initiation of the focus group for all participants. All five single-session focus groups, which lasted approximately 45-60 minutes each, were conducted in English, online via Zoom, after which participants received a $25 gift card. Focus groups were not stratified by participant demographics. The focus groups were conducted by two female PhD researchers who self-identified as non-Hispanic White and had no prior established relationship with the participants. During the focus groups, participants were asked to reflect on the following topics: 1) nonmedical services and supports that would have been useful after cancer diagnosis, 2) challenges and preferences for accessing nonmedical services, and 3) how to design a system to connect to those resources. Discussion guides were developed based on factors shown to impact social determinants of health as outlined in the World Health Organization Commission on Social Determinants of Health conceptual framework for action [Reference Solar and Irwin23].

From December 2021 to April 2022, we additionally conducted key informant (KI) virtual interviews with members of the oncology care team from across multiple health systems across the Twin Cities. Participants were identified via snowball sampling based on professional oncology contacts of the study team. Among participants, at the conclusion of the interview, we asked if they could identify other eligible colleagues who met our study inclusion criteria who we then reached out to for additional interviews. KI interviews were conducted individually with the participants and researchers who also conducted the focus groups. One-time interviews lasted 45–60 minutes and participants received a $100 gift card. During the interviews, KIs were asked to reflect on two key topics 1) current processes and tools for screening and connecting individuals with cancer to needed services and supports, 2) and key elements of a novel tool or process that would ensure patients had access to needed services and supports.

For both focus groups and KI interviews, we recorded the content using digital audio recording via Zoom, which was then transcribed by the research team after each interview, de-identifying all datasets and extracting demographic characteristics of each study participant. Study team members Parsons and Hillmer then independently coded transcripts to develop themes for each of the key topics discussed above (see Supplemental Tables 1–2 for a copy of the focus group and interview guides). We conducted our analysis based on the approach outlined in Braun & Clarke’s thematic analysis [Reference Braun and Clarke24]. We determined our study sample size for focus groups and KI interviews based on theoretical saturation [Reference Fusch and Ness25], after which the study team concluded that no new data or themes were identified from additional qualitative data collection. Sample size was not determined a priori as it is contingent on evolving themes [Reference Vasileiou, Barnett, Thorpe and Young26]. We then used a constant comparative approach [Reference Glaser27,Reference Fram28] in the context of cancer treatment and survivorship to identify initial key themes within topics. After reviewing the transcripts, we used an iterative process of reducing the data by first using data from our preliminary coding to develop initial themes from the first round of data reduction and then further reducing and recoding until core themes were developed within a topic [Reference Fram28]. Exemplary quotes representing each theme were then selected.

Advisory board consultation

After themes were identified, we brought the findings to our multidisciplinary Community Advisory Board (Supplemental Table 3) consisting of 12 community based organizations focused on cancer patients to review themes from the focus groups and KI interviews and collect additional context and feedback on developing a prototype technology that screens and connects individuals with needed services and supports after a cancer diagnosis. We then used the combination of themes developed from the KI interviews and focus groups and emphasized by the advisory board to identify key components that were developed and included in the functionality of the prototype application.

Creating the prototype

We employed a Human Centered Design (HCD) [Reference Wheelock, Bechtel and Leff29] approach while developing our prototype, as it allows software teams to create a personalized interface when designing interfaces for stakeholders. HCD involves users throughout the entire design process, which improves the usability and user experience. We designed and developed a patient-centered social-care referral platform that allowed for unique interfaces designed for the workflows of our stakeholders (i.e., patients, oncology care team, and CBOs). The final platform integrated each of the key themes identified through our focus groups and KI interviews into the core functionality (see key themes outlined in results below). The initial prototype was completed in April 2021 with ongoing input from the study team, a collaboration between the University of Minnesota and XanthosHealth. Details for the prototype, ConnectedNest (a product of XanthosHealth), are also outlined below in the results. Prior to completing the prototype, we consulted again with the Advisory Board to gain additional feedback for refinement of the prototype prior to prototype testing.

Prototype testing

Usability testing

After prototype development, the team performed a virtual task-based usability assessment in April 2021 with 48 total cancer patients and caregivers, oncology care teams, and CBO administrators (16 from each group). Each product evaluation session began with a participant briefing, which included an introduction of a think-aloud protocol and an explanation of the procedure for sharing their screen over Zoom. After the briefing was finished, the participant was asked to complete a series of basic tasks (e.g., registration, screening, and connection) based on their user type (patient/caregiver, oncology care team, and CBO administrator) using hypothetical data based on their experience. After each evaluation session, the team recorded issues identified by the participant and agreed on an estimated degree of impact, defined as the user’s inability to complete a task successfully or issues related to user frustration, confusion, or inefficiency. After all sessions had been completed, using a consensus approach, the team discussed each identified issue to modify prior to implementation in health system and patient settings. See Fig. 1 for an overview of the prototype development and testing process.

Figure 1.

Overview of the process for the development and testing of ConnectedNest. CBO = community based organization; EHR = electronic health record.

Results

Prototype development

Focus groups

Thirty participants took part in five focus groups. Participants included individuals aged 18+ who were patients or caregivers of those receiving cancer or survivorship care within our community and academic clinics in a large integrated health system in Minnesota. Among participants, 13.3% were caregivers and 86.7% were individuals with a history of cancer. The median age was 57 and participants were diverse by cancer type (e.g., breast, prostate, and melanoma), sex, and race/ethnicity (10% Black/African American; 3.3% American Indian; 86.7% White; and 6.7% Hispanic/Latino). Most participants were within five years of diagnosis and their stage of cancer at time of diagnosis ranged from 0 to IV (Table 1). Forty-seven percent of participants had>4 members in their household, with half of participants reporting a median household income <$100,000.

Table 1.

Characteristics of focus group and key informant interview participants informing development of ConnectedNest

We developed several key themes from focus group interviews (Table 2). The first theme we identified was that participants have a broad range of needs that include financial help (e.g., money for rent), transportation, housecleaning, help preparing food for patients and their families, help picking up supplies, childcare, and emotional and mental health support. Our second theme highlighted that significant barriers exist to connecting patients with needed resources, with the most notable barrier being lack of easy access to and availability of information on needed social and community services. Finally, we identified a theme regarding how best to design a system to connect individuals to nonmedical services after diagnosis. In that theme, participants noted the need to develop a tool that was not just “a binder of information,” but a resource that would evolve with the changing needs of cancer survivors, provide easy access to contacts from a curated set of engaged organizations, and be linked to a trusted person or organization to introduce or advocate for the technology.

Table 2.

Key themes identified from focus group participants describing nonmedical services and supports most useful after a cancer diagnosis and systems to connect to these services

KI interviews

Fifteen KIs from oncology care teams (e.g., oncologists and social workers) across multiple health systems and leaders of a diverse set of CBOs (e.g., legal care, social support, and food insecurity) took part in structured interviews (Table 1). Several key themes were developed as part of these interviews (Table 3). First, when discussing the current process and tools for screening and connecting individuals with cancer to needed services and support, KIs noted a shortage of social workers who can provide information on these services. They also identified a lack of consistent screening for nonmedical needs within the medical system. Once identified, health systems and CBOs noted difficulty in meeting the needs of non-English-speaking clients and those from diverse cultures. Finally, they noted use of different tools and screening processes across organizations resulting in duplication of information collected. In order to support more streamlined screening and connection for needed social and community services, KIs identified a number of key areas for development. Themes included that, ideally, there would be a tool that can be introduced before and/or after a clinic visit and by a trusted source. It should be patient-directed as some needs are sensitive to discuss. It would also be beneficial if the tool could interface with the EHR and provide personalized referrals. Finally, there should be a way to remind patients and families, over time, that support is available.

Table 3.

Key themes from key informant interviews with oncology care team members and community based organizations for developing tools or processes for connecting cancer patients with services to address social needs

Community advisory board

Using information from the focus groups and interviews, we brought key themes to our Community Advisory Board. These themes aligned with the experiences of our Advisory Board and were endorsed as key areas of focus when developing our prototype. Once the initial prototype was developed, we again consulted with our Advisory Board prior to prototype testing. The initial reactions to the prototype were overwhelmingly positive, with several noting the need for services and technology such as this to improve the current system challenges. The CAB noted additional considerations for the team to remain mindful of throughout the piloting process including how information would flow between entities, differences in confidentiality needs for specific information (e.g., legal), and the goal of minimizing the reporting burden (e.g., duplicate information on eligibility reported to multiple organizations) for patients and caregivers.

From each of these three sets of stakeholders, we identified key challenges with the current system for connecting with needed social and community services and focused on these needs in developing our final prototype for a novel social-care referral technology, ConnectedNest [30].

ConnectedNest

ConnectedNest, through its Health Insurance Portability and Accountability Act (HIPAA) [31]-compliant data-sharing platform, connects individuals with social needs to CBOs through patient self-referral and/or oncology team referrals. The ConnectedNest architecture uses a modern web design approach for the multi-interface platform (Fig. 2). The user interfaces are built using React Native, which allows the patient interface to be developed and accessible on iOS and Android. The underlying architecture of the platform resides in a HIPAA secure environment that exposes two secure application program interface(s) used to communicate with public-facing interfaces. Ruby on Rails powers the platform and creates and maintains any changes within a PostgreSQL database. Elasticstack and its associated tools (i.e., Elasticsearch, Kibana, Beats, and Logstash) are used across systems for analytics and data retrieval. The prototype is EHR agnostic and has the capability to be used across multiple EHR platforms. The platform consists of three interfaces to support all three groups (patients, oncology care teams, and CBOs) to engage in the social-care referral process. ConnectedNest includes the following three components:

1. EmpowerNest

EmpowerNest is a patient interface that allows patients to self-screen for social needs and self-refer to organizations. ConnectedNest uses an algorithm to match patients to programs based on eligibility criteria. The patient-facing mobile app is designed to support self-screening for social needs and make referrals to CBOs. This self-screening, conducted on their own or at their clinic, can reduce stigma associated with direct questioning from clinic staff and increase access to resources. Assessments are written at a 4th-grade reading level. When individuals’ assessments indicate a need, they are immediately presented with organizations that provide services that can meet those needs for which they are eligible. Individuals can then choose which CBOs they would like to connect with. Patients can then indicate when a service was received.

2. CommunityNest

CommunityNest is the community organization web portal that allows community organization staff to create and maintain their community programs. The interface provides real-time descriptions of the status of referrals within the organization. CBO staff may also view patient needs and the status of existing referrals. The web portal allows CBOs to register their services. Once a CBO is registered, they are allowed to add and update their services and respond to clients who request services through the patient interface. It allows CBOs to specify and verify eligibility and assign eligible patients to team members so they can receive services as well as indicate when services were received. This portal also allows CBOs to refer patients to other CBOs within the platform.

3. EngageNest

EngageNest supports healthcare teams who are supporting their patients with an EHR interface. Healthcare teams can view patient needs and refer patients to CBO organizations that align with patient preferences. The EHR-enabled component of the platform allows oncology care teams (social workers, navigators, nurses, physicians, and others) to assist, advocate, and stay informed about the social-care referral. The “Substitutable Medical Applications and Reusable Technologies (SMART) on Fast Healthcare Interoperability Resources (FHIR)” [Reference Mandel, Kreda, Mandl, Kohane and Ramoni32] application allows the clinical care teams to be connected with their patients through the EHR. Clinical care teams can view the referral status and needs of their patients, receive status updates, and recommend organizations with whom their patients should connect.

ConnectedNest is designed to support multiple social need pathways, which may be initiated by each of our stakeholders (patient, oncology care team, and CBO). We describe a potential healthcare system pathway in Fig. 3. Figure 3 begins with a patient downloading the application on their own device during a clinical encounter. The patient completes the social needs screening assessment and then connects with their provider. This allows the provider to view patient’s needs and refer them to a CBO that matches their needs. Next, patients receive a notification on their device to review this provider-recommended CBO and the patient may choose to connect to the organization. CBO staff then receive a notification that someone has requested to use a particular program. CBO staff can review and accept that patient based on eligibility criteria. Accepted patients and providers are then notified when patients are accepted into a program.

Figure 2.

Overview of the ConnectedNest platform architecture. Legend: API: application programing interface; HIPAA = Health Insurance Portability and Accountability Act; HTML = HyperText Markup Language; JS: JavaScript.

Figure 3.

Overview of a) ConnectedNest components and b) an example healthcare system pathway for cancer patients, oncology care teams and community based organizations to address social needs after a cancer diagnosis. Fig. Legend: SDoH = social determinants of health; CBO = community based organization. SDoH = social determinants of health; CBO = community based organization.

Prototype testing

Usability (UI/UX) testing

We conducted three rounds of task-based usability assessment with 16 individuals with cancer and their caregivers, 16 oncology care team members, and 16 CBO administrators throughout the design process. For each user interface (patient, provider, and CBO), we conducted three rounds of user testing. We followed the Lewis and James approach [Reference Sauro and Lewis33], which states that four to five user tests can detect 80% of a technology’s usability problems. Increasing the number of users has diminishing returns. For our technology, the first and second rounds had six users per interface, and four users per interface were used in the final round. Between each round of testing, problems identified by users were addressed and implemented in the prototype.

During patient interface testing (EmpowerNest), over 90% of users were able to complete basic tasks (i.e., registration, completion of a social needs assessment, and understanding their social needs). While patients reported interest in driving the social-care referral process, the interface initially lacked the appropriate information needed for patients to make decisions. In the final round of testing, 75% of users successfully connected to test organizations in the prototype.

Similar results were reported from the CBO testing interface (CommunityNest). Basic functions (i.e., organization creation, program creation, and chat) were accomplished by 90% of the users. However, the interface initially lacked the appropriate information for complex decision-making, such as evaluating if a client was eligible for a particular program and referring clients to other organizations. In our final round of usability testing, only one user was unable to complete both of these tasks.

The interface design for the clinical team (EngageNest) was similar to that of the CBO interface. Therefore, much of the design learnings of the CBO interface could be applied to the EHR interface. Unlike the CBO staff, 80% of clinical team users were successful in referring patients to CBOs. Clinical workflow and the visual design of the interface initially made it difficult for clinical team members to work with an external system. For example, initially, only 60% were able to “add a patient” to their clinical team and understood that context. Based on this feedback, additional modifications were made and, in our final round of testing, only one user was still unclear about the process for adding patients.

Discussion

Given the dramatic growth in the financial burden of cancer over the past decades, cancer patients are at particular risk for social needs and experiencing an adverse impact of these needs on care management and health outcomes. Using input from a diverse set of focus groups and KI participants, user experience/user interface testing, and a multidisciplinary community advisory board, we developed a new technology solution, ConnectedNest, which connects individuals in need to CBOs through direct and/or oncology team referrals, with interfaces to support all three groups (patients, CBOs, and oncology care teams). After prototype development, we conducted usability testing, with broad success (>80%) for participants to complete key tasks within the prototype. Throughout the development process, participants noted the importance of technology like ConnectedNest to fill current gaps in screening and connection of individuals with cancer with needed social and community services using a patient-empowered approach with the support of their healthcare team and community organizations.

The importance of addressing social needs among individuals with cancer will only grow with the rising costs of cancer care and shift toward incorporating social needs metrics into models of value-based care [Reference Guy, Yabroff, Ekwueme, Rim, Li and Richardson5,Reference Alcaraz, Wiedt, Daniels, Yabroff, Guerra and Wender8]. Using multi-stakeholder input, ConnectedNest provides an opportunity to address these needs by providing a cohesive ecosystem that allows all stakeholders to engage. We prioritized ConnectedNest to be centered on patient empowerment, putting access to social services at the fingertips of users by giving them an active role in their health. In addition, we wanted to create a system in which CBOs could easily engage by listing and updating their services, including real-time updates such as pop-up services or traveling kitchens. Flexible solutions like ConnectedNest have the potential to be adapted and incorporated into a diverse set of health systems and community organizations. The innovative EHR-enabled health information technology platform allows for screening, assessing social needs, and connecting individuals with cancer to CBOs that can address their needs with the overall goal of improving the health and psychosocial outcomes of these individuals.

Our multi-stakeholder engagement with patients, oncology care teams, and CBOs revealed a need for flexible, capacity-enhancing solutions for a system that is resource-constrained. Oncology care teams use a variety of social needs screening tools to evaluate social needs but have limited staffing and time available [Reference Zettler, Feinberg, Jeune-Smith and Gajra7]. They also utilize a variety of workflows in order to screen and connect individuals to needed services [Reference Zettler, Feinberg, Jeune-Smith and Gajra7]. CBOs have evolving programing to address the needs of their clients’ and patients’ needs that will necessarily change throughout the course of their diagnosis, treatment, and survivorship. Recognizing the need for a flexible technology, we directly addressed these hurdles by building an adaptable technology that can fit the needs of a diverse set of organizations, allowing for: 1) use of a variety of social needs screening tools, 2) EHR-enabled technology with the ability to work across a diverse set of oncology care workflows, 3) providing direct access to CBOs to create up-to-date programing, and 4) real-time evaluation of current needs for patients throughout the trajectory of their diagnosis.

Overall, this work has highlighted the challenges with the current system for screening and referral for social and community services. Prior work, which is supported by our focus groups and KI interviews, highlights that traditionally, connecting individuals with resources to address social needs has fallen to patient navigators and social workers within the oncology care teams [Reference Perlmutter, Herron, Rohan and Thomas34]. However, like many multidisciplinary oncology care teams in the United States, the resources needed to connect individuals with needed social and community services exceed the available staffing [Reference Patel, Hinyard and Hlubocky35]. There is a critical need to identify solutions to build capacity for more effectively connecting oncology patients with needed social and community resources to alleviate distress. Cancer is a unique disease that is highly time and resource-intensive, requires ongoing collaboration with multidisciplinary care teams throughout treatment, and, given treatment advances, has expanded the scope and trajectory of survivorship. This unique combination calls for a unique approach to connection with social and community services that is patient-empowered and goes beyond existing technologies.

With the development of the ConnectedNest prototype, future research will examine the use and integration of this technology in health systems and use among other stakeholders (e.g., payers). Specifically, in September 2022, XanthosHealth participated in the Sync for Social Needs Initiative [36], announced by the White House, uniting leading health technology companies and health systems to standardize the sharing of patient data on social needs, including food insecurity. Currently, XanthosHealth and University of Minnesota researchers are conducting a real-world pilot in the Twin Cities, Minnesota with the Minnesota Cancer Alliance (MCA) [37], a convener of over 100 cancer-specific organizations. This work builds on the engagement with CBOs during the prototype development phase through Community Advisory Board meetings, KI meetings, and usability testing supported through a National Cancer Institute-funded Phase I Small Business Innovation Research (SBIR) project award. In the current pilot, the team is engaging with CBOs that are part of the MCA, and conducting KI interviews to understand how to best meet the social needs of individuals with cancer through ConnectedNest. The study is also recruiting patients directly from CBOs that are part of the MCA network to pilot test ConnectedNest, as well as working directly with a select group of CBOs for a deeper understanding of the challenges and necessary software and workflow enhancements to impact patient-centered outcomes in this population. Future phases of ConnectedNest development will include integration of the technology into the electronic medical record, which is supported by the current SMART on FHIR design. As part of this development, we plan to include discussions on how and where data are stored as well as patient notification processes for oncology care team members to access this information. We are additionally examining how best to engage patients and CBOs to ensure that included services are up-to-date and effective. This work can be used to inform initiatives such as payer-driven value-based reimbursement initiatives and US Centers for Medicare & Medicaid Services demonstration projects [Reference Schweitzer and Mohta38]. As part of these discussions, we must ensure stakeholders are engaged to provide feedback on the incorporation of tools such as ConnectedNest to ensure sustainability of these technologies coupled with development and expansion of resources to meet the social needs of the communities. At the same time, we must ensure that as efforts to screen for social needs become increasingly integrated into the clinical setting [Reference Andermann39], new tools support alignment of reporting on these needs in order to reduce duplicate information and burden on the care team. ConnectedNest works toward this alignment by placing resources and services in a single tool, with one set of registration information accessible in the same format to participating community organizations.

We recognize certain limitations with the current work. First, our focus group and KI interviews were focused on English-speaking cancer patients, providers, and CBOs based in a single, large metropolitan area. While we focused on recruiting a diverse population of stakeholders with varied backgrounds and experience, and whose experience aligned with barriers noted in previous literature, our study population was not as socio-economically diverse as the US population in terms of racial/ethnic composition, gender, and income. Future studies can examine additional opportunities for addressing social needs with technology solutions among broader cancer populations with additional focus on socio-demographically underrepresented populations. Additionally, we conducted our work when many health systems were operating under constrained resources and modified protocols during the COVID-19 pandemic. While operations and staffing may eventually return to pre-COVID levels, the insights provided by all stakeholders in the development of the prototype allow us insight into how technology like ConnectedNest might provide benefits at the height of health system and financial constraints. Importantly, we must ensure that programs and funding developed and implemented to address social needs during the height of the pandemic remain sustainable, as the effectiveness of tools like ConnectedNest can only be maximized if CBOs have adequate resources and support for their programing. Finally, while our prototype was developed to promote usability and accessibility across a broad range of patient populations, including use of screening tools written at the 4th-grade reading level, future expansions of this work should ensure that tools like ConnectedNest are accessible for individuals with limited health literacy, those with limited English proficiency, and those with limited access to digital technologies.

Going forward, future work will examine the integration and implementation of ConnectedNest for oncology patients, oncology care teams, and cancer-focused CBOs to build capacity for effectively addressing distress in this population. This solution has the potential to provide an innovative, cost-effective, sustainable, and scalable way to enhance capacity to connect individuals to social and community services across other cancer centers and practice settings in the US.

Supplementary material

The supplementary material for this article can be found at https://doi.org/10.1017/cts.2024.570.

Acknowledgments

We are thankful to Dr Teresa Hillmer and Ms. Allison Iwan for their support with data collection, analysis and project management. We thank all participants in the focus groups, KI interviews, and user interface/user experience (UI/UX) testing, as well as our members of our Community Advisory Board.

Author contribution

HMP: conception and design of the work, collection or contribution of data, contributions of analysis tools or expertise, conduct and interpretation of the analysis, and drafting of the manuscript. HMP takes responsibility for the manuscript as a whole. DH: conception and design of the work, collection or contribution of data, contributions of analysis tools or expertise, conduct and interpretation of the analysis, and drafting of the manuscript. DH takes responsibility for the manuscript as a whole. AB: conception and design of the work, interpretation of the analysis, and drafting of the manuscript. AB takes responsibility for the manuscript as a whole. TRC: conception and design of the work, interpretation of the analysis, and drafting of the manuscript. TRC takes responsibility for the manuscript as a whole. JH: conception and design of the work, interpretation of the analysis, and drafting of the manuscript. JH takes responsibility for the manuscript as a whole. SGJ: conception and design of the work, interpretation of the analysis, and drafting of the manuscript. SGJ takes responsibility for the manuscript as a whole. PKM: conception and design of the work, interpretation of the analysis, and drafting of the manuscript. PKM takes responsibility for the manuscript as a whole.

Funding statement

This work was supported by an SBIR Phase I contract to XanthosHealth by the National Institutes of Health, National Cancer Institute (FY21 SBIR Phase 1 Topic 423; Software to Address Social Determinants of Health in Oncology Practices; Contract: 75N91021C00044). University of Minnesota received a subcontract award on this contract.

Competing interests

Dr Karaca-Mandic and Dr Haynes hold executive positions and equity in XanthosHealth, a University of Minnesota startup developing a social-care referral platform for oncology. This relationship is managed by the Conflict of Interest office at the University of Minnesota. XanthosHealth filed for a provisional patent application with the U.S. Patent and Trademark Office on July 14, 2023 and a full utility patent on July 14, 2024.

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Figure 0

Figure 1.Overview of the process for the development and testing of ConnectedNest. CBO = community based organization; EHR = electronic health record.

Figure 1

Table 1.Characteristics of focus group and key informant interview participants informing development of ConnectedNest

Figure 2

Table 2.Key themes identified from focus group participants describing nonmedical services and supports most useful after a cancer diagnosis and systems to connect to these services

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Table 3.Key themes from key informant interviews with oncology care team members and community based organizations for developing tools or processes for connecting cancer patients with services to address social needs

Figure 4

Figure 2.Overview of the ConnectedNest platform architecture. Legend: API: application programing interface; HIPAA = Health Insurance Portability and Accountability Act; HTML = HyperText Markup Language; JS: JavaScript.

Figure 5

Figure 3.Overview of a) ConnectedNest components and b) an example healthcare system pathway for cancer patients, oncology care teams and community based organizations to address social needs after a cancer diagnosis. Fig. Legend: SDoH = social determinants of health; CBO = community based organization. SDoH = social determinants of health; CBO = community based organization.

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