Coordinating the use of genetic tests and related services in British Columbia – Key messages

Michael G Wilson
McMaster University

What’s the problem?

The ongoing planning, funding, delivery and evaluation of genetic tests and related services in British Columbia face a number of challenges.

  • Demand for genetic tests and related services appears to be growing exponentially, which can be explained by their increased availability (and affordability) coupled with their use for a broader scope of both rare and common diseases and conditions. This is expected to put increased pressure on current programs and services.
  • Current programs and services lack coordination, which limits their ability to efficiently respond to emerging pressures, especially for common diseases and conditions.
  • A variety of gaps exist in the health system arrangements within which genetic tests and related services are provided. These gaps exist in delivery arrangements (e.g., lack of overarching regulations or guidelines for the delivery of and quality assurance in all laboratory and non-laboratory services, and lack of coordination and communication across providers and settings), financial arrangements (e.g., lack of coordinated funding and reimbursement models to support a re-organization of existing resources), and governance arrangements (e.g., lack of robust medical and administrative frameworks and processes to inform coverage policies and decisions).

What do we know (from systematic reviews) about three viable elements of a comprehensive approach to address the problem?

Element 1 – Develop a comprehensive policy framework for the ongoing planning, funding, delivery and evaluation of genetic tests and related services

A limited number of systematic reviews were identified that addressed this element. An older medium-quality review found benefits of a coordinated and intensified strategy to inform, consult with and engage stakeholders. One high-quality and one medium-quality review found insufficient evidence to support establishing a central ‘gatekeeper’ or ‘hub’ to coordinate decision-making. No reviews were found about establishing monitoring and evaluation mechanisms to support government’s role in the financing and delivery of genetic services, in strengthening capacity in health technology assessment, or in developing increased capacity in health human resources planning.

Element 2 – Develop a quality framework for genetic tests and related services

Several high-quality reviews found benefits related to many sub-elements: strategies to evaluate the type of specialist resources needed to support credentialing processes; strategies to support the implementation of regulation and guidelines for quality assurance/control; and funding and remuneration mechanisms that support coordinated and appropriate use of services. Several medium-quality reviews found benefits in increased opportunities for the education and training of health professionals and implementing quality monitoring and improvement systems.

Element 3 – Develop a framework to support consumer/patient/family decision-making about genetic tests and related services

A limited number of high-quality reviews found benefits of strategies to involve consumers/patients/families in health-related decisions as well as in developing decision aids or decision-support systems.

What implementation considerations need to be kept in mind?

Potential barriers to the implementation of a comprehensive approach to coordinating the use of genetic tests and related services in B.C. can be identified at the level of patients/individuals (e.g., the asymmetry of knowledge and expertise between themselves and providers, frustration with past efforts), providers (e.g., perceived infringement on autonomy, lack of awareness of shared decision-making approaches, financial disincentives, challenges of standardizing professional practices), organizations (e.g., making decisions in a context of ‘media hype’ and legacy of platform technologies), and system level (e.g., challenges of cross-provincial coordination and standardization).

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