Women, racial and ethnic minorities, underinsured, low education and income level, and geographically isolated have disproportionately low rates of organ transplant.1-2 Limited access to the organ transplant waitlists combined with the scarcity of the organ pool results in over 100,000 deaths annually in the United States.23
Inequities in access to transplant have been long-documented. Despite efforts at reform, little progress has been made.
Lack of reliable data is a principal barrier to understanding how social determinants of health influence access to organ transplant.
- There is currently no monitoring of patients while they go through the selection process.
- National data registries of transplant include few social determinants of health, with limited reliability.
- National research networks that use electronic health record data lack the ability to capture patients during their transplant evaluation.
In order to effectively design interventions that improve equity in access to transplant, there is a critical need to reliably track patients through the selection process and integrate social determinants of health data along the continuum of transplant care.
The mission of the Consortium for the Holistic Assessment of Risk in Transplant (CHART) is to impart foundational change to the process of collecting, organizing, and employing data to determine patient eligibility for transplant, leading to improved equity in access to care, increased transparency in the transplant selection process and improved value for patients and clinicians.
Using multidimensional health system data, CHART will identify and characterize center and system level drivers of inequities in access to transplant. We will identify causal mechanisms between psychosocial risk and adverse clinical outcomes, and in doing so demonstrate the role of social determinants of health in success after organ transplant.
We will bring increased attention to the role of clinicians, care processes, institutional practices and systems of care in potentiating inequitable access to transplant.
We will develop targeted interventions that improve clinicians' ability to assess transplant-related risks across multiple domains and improve equity in access to transplant through inclusive and objective systems and processes of care.
- Scientific rigor
- Data transparency
- Team science
- Acquire novel multidimensional multicenter data
- Establish causal mechanisms between psychological and social risk and adverse clinical outcomes
- Develop and validate composite, multidimensional outcomes that reflect success after transplant
- Identify and make accessible metrics of risk and outcomes critical to candidacy determination
- Create and implement system, center and program-level interventions that reduce patient vulnerability to systemic and institutional racism
Patients from historically disenfranchised groups (e.g. women, racial and ethnic minorities, underinsured, low education and income level, and geographically isolated) have disproportionately low rates of organ transplant.
Access to organ transplant requires patients to complete a multi-phase selection process that includes collection of clinical data and well as data on social determinants of health.
The data on a given patient is 1) enormous, 2) located in a variety of semi-structured fields and clinical notes, and importantly, 3) not organized such that SDOH data can be integrated alongside clinical data for multidimensional risk assessment.
In the absence of accessible integrated multidimensional patient data, subjective judgments are relied upon to determine a patient’s transplant eligibility. This leaves the transplant selection process highly variable, vulnerable to both structural bias (i.e., related to institutional policies and processes) and personal bias (i.e., related to individuals’ prejudices or judgments), and has resulted in inequities in access to organ transplant.
Multidimensional patient-level data is key to eliminating the inequities in the transplantation system. This data is currently hidden in a variety of sources from the patient’s genome to their home address.
The Consortium for the Holistic Assessment of Risk in Transplant has been formed to collect and examine this data for valuable information about risks of success and failure across the entire transplant care continuum, including:
- How do patients enter the transplant system?
- Where do people fall off the pathway to transplant, and why?
- What does it 'cost' a patient to complete the transplant selection process, and where can we reduce these costs?
- How are psychological barriers to transplant predicted, mitigated, or prevented?
- Green space
- Air and water quality
- Access to health care
- Insurance coverage
- Health care utilization
- Access to primary care
- Medical and surgical comorbidities
- Health literacy
- Health numeracy
Housing and Home Environment
- Household size
- Housing stability
- Food security
- Access to transportation