Building a Learning Health Care Community (LHCC) Model for Women’s and Children’s Health in Peel

Rationale: Community organization leaders in Peel and Trillium Health Partners (THP) have identified data collection and integrated knowledge translation between health and community organizations as a priority to improve health outcomes for equity-seeking groups1,2. Within the specific area of maternal and child health, there is a need to understand the current health data ecosystem using the Learning Health System and community-centered Learning Health Care Community (LHCC) models to begin building an integrated health system that can influence healthcare decision-making and address health needs and care delivery challenges3,4

Project Aim: We aim to begin developing a Women’s and Children’s (W&C) LHCC that bridges THP with community and health systems to improve maternal and child health within diverse communities across Peel. We will focus on one of the foundational elements of LHS, the enhancement of the digital infrastructure to effectively collect health data, specifically patient outcomes and experiences within the health care system, and promote a regulatory environment to facilitate data use and sharing. We seek to understand, “How can the W&C Program at THP safely collect and integrate individual-level health data, including the social determinants of health (SDOH), to close data gaps within the hospital and establish better linkages with the community it serves?”

Objectives:
1) To identify key stakeholders and networks in maternal and child health care at THP and across community health and social services in Peel
2) To explore how community stakeholders and healthcare providers within maternal and child health can safely and efficiently collect and integrate individual-level health data including data about the SDOH
3) To create a supportive environment for an LHCC by fostering partnerships and formalizing stakeholder engagement enabling bidirectional communication between healthcare systems and the community to enhance the health of women and children

IBH LHS Alignment: Our project aligns with THPs commitment to developing a Learning Health System (LHS)5. Findings from our previous work show there is a barrier to accessing current clinical knowledge by providers and a lack of trust when providing data among service-users, which deters patient-centered care, a foundational element of LHS3. Implementation of an LHS requires fostering trusting relationships between diverse stakeholders including community services and members. We, therefore, draw on the LHCC model, which utilizes all three core components of LHS, namely foundational elements (e.g. data utility, digital infrastructure), care improvement targets (e.g. decision support tools, patient-centered care, clinician-community links) and a supportive policy environment (e.g. broad leadership, performance transparency) with a new fourth component, active and continuous stakeholder and community engagement3,6. This fourth component is vital to implementing an LHS as it centers community co-development and evidence-based engagement approaches, enabling systems to address health needs and care delivery challenges appropriately. Formalizing community-clinical linkages also creates opportunities for integrated data systems between communities and health systems, connecting individualized day-to-day health and SDOH data with clinical data to support decision-making for providers, shape policy, and system planning3.

Impact: The goal of the LHCC system is to improve healthcare beyond the health system and positively impact health outcomes within and across diverse communities. Our proposed project is foundational to the development of a W&C LHCC system. By continuously engaging community members, service users, healthcare providers, other community stakeholders, and decision-makers, the W&C LHCC will aim to achieve and maintain healthy women, children, and families through bidirectional learning and shared responsibility. The future W&C LHCC will be the first of its kind in Canada and support whole health through integrated data-sharing systems and culturally appropriate and responsive health services across health systems and community settings.

This project will use a Community-Based Participatory Research (CBPR) approach requiring meaningful community involvement that integrates academic and community-based knowledge throughout the research7,8. This approach emphasizes community-driven and social action-oriented principles9. We commit to honoring and incorporating community knowledge, experiences and voices, promoting the bi-directional exchange of information, shared learning, the co-creation of knowledge and capacity building9. In line with the proposed assessment, planning and implementation of LHCC by Mullins et al., we will use a phased approach to conduct an initial assessment of resources needed to establish a W&C LHCC.

Methodology: As we have done in our previous work, we will adapt an established Data Asset Mapping tool to understand and identify the critical enabling factors to operationalize the collection of community-based, social, and health data, including the when, how, what, and why data are collected and the infrastructure necessary to house, govern and use these data1,10. We will conduct the project in 4 phases. Phase 1. Establishing a Community Advisory Board (CAB): The CAB will be composed of up to six healthcare providers (family physicians, pediatricians, obstetricians, midwives, nurses, inter-professional, allied health workers, etc.) and six service users (patients, caregivers) from the W&C Program, two Community Partners (Peel Family Support Network, ABR-SD Healthcare Committee etc.), and two researchers. The CAB will establish the project governance structure and collaboration principles11. The CAB will meet monthly for one hour and guide: participant recruitment; data collection, analysis, and interpretation; multi-stage evaluation; and knowledge translation. Phase 2. Identifying and Defining the Problem: We will hold a 90-minute workshop with the CAB and key stakeholders, including service users, health and social service providers, THP Leadership, THP population health and data analytics personnel, members of the project team, and other stakeholders identified by the CAB. The workshop will include an environmental scan of cross-sector data integration projects in the context of the LHCC in jurisdictions like our context, prioritizing the key health inequity priorities in Peel, already identified from our initial work, and matching these inequities to gaps in existing datasets or fragmented data1. We will identify the communities impacted, contributing factors, who uses or benefits from the existing datasets, and which data are available across the sectors, including community service provider data. The output from this phase will be a completed Problem Identification Tool10. Phase 3. Mapping the Data Gaps: We will collect information from healthcare and the community via; 1) a Data Gaps Survey based on our prior project and the Data Gaps Tool10; and 2) separate workshops for health and social service providers and users1. These workshops will be 90 minutes and focus on validating the problem statement identified in Phase 2, discussing the barriers and facilitators to collecting and integrating health data, including SDOH data, and exploring preferences for how, when, why, and what health data should be collected. The output will be a completed Data Gaps Tool10. Phase 4. Analysis and Results: Each workshop will be audio-recorded. We will take extensive notes during the workshops and conduct a conventional content analysis of the qualitative data12. We will analyze quantitative data from the Data Gaps Survey to generate frequency counts and percentages. We will prepare a peer-reviewed manuscript and report to share key recommendations for better health and SDOH data collection processes, its uses within the W&C Program, and the next steps for designing and implementing a W&C LHCC model3.

References:

1. Family and Child Health Initiative. We are all accountable: Collective action through data to co-design a more equitable and integrated health system in Peel Region. Mississauga ON: Institute for Better Health; May 2023.
2. Family and Child Health Initiative on behalf of the Peel Family Support Network. A Needs Assessment to Support Collective Action for COVID-19 Pandemic Support and Recovery with Families in the Peel Region. Mississauga ON: Institute for Better Health; May 2022.
3. Mullins CD, Wingate LMT, Edwards HA, Tofade T, Wutoh A. Transitioning from learning healthcare systems to learning health care communities. Journal of Comparative Effectiveness Research. 2018;7(6):603-614.
4. Menear M, Blanchette M-A, Demers-Payette O, Roy D. A framework for value creating learning health systems. Health research policy and systems. 2019;17(1):1-13.
5. Reid R, Desveaux L, Walter W, Kuluski K, Lee-Food N, Rosella L. The Learning Health System: An Introduction: Institute for Better Health; 2023.
6. McGinnis JM, Stuckhardt L, Saunders R, Smith M. Best care at lower cost: the path to continuously learning health care in America. 2013.
7. Caine V, Mill J. Essentials of community-based research: Routledge; 2016.
8. Greer AM, Amlani A, Pauly B, Burmeister C, Buxton JA. Participant, peer and PEEP: considerations and strategies for involving people who have used illicit substances as assistants and advisors in research. BMC public health. 2018;18(1):1-11.
9. Jull J, Giles A, Graham ID. Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge. Implementation Science. 2017;12(1):1-9.
10. Pulse Lab Jakarta. Data Asset Mapping Tools. 2016

Study’s Publications

LHS Community Report _Foundational Phase