Today, the Ontario Government stated they plan to implement some of the recommendations listed in their Rare Diseases Working Group Report which originally listed 19 recommendations.
Based on the report, the Ontario government will:
- Supporting better patient care by establishing a centralized system where clinical expertise and educational resources on rare diseases will be available to health care providers across the province
- Developing a plan to improve access to genetic testing
- Creating an Ontario-specific rare disease registry that will help foster research and innovation in the discovery, management and treatment of rare diseases.
These 3 action items encompass many of the 19 recommendations listed by the Working Group. The 19 recommendations are:
- Sponsor the development of an Ontario-based Rare Disease registry
- Develop well-defined criteria to enable access to novel genome sequencing technology
- Identify, prepare and maintain an inventory of existing specialized clinics/services, evolving research programs and rare disease support groups and other initiatives across the province.
- Include rare disease education within individual curricula in undergraduate and post-graduate medical education and physician training programs.
- Establish criteria for “Centers of Reference”
- Develop a “hub and spoke” style between Regional Genetic Service Centres, primary care, and appropriate specialist providers, and education and capacity building programs
- Develop and disseminate accredited clinical and patient education tools such as Clinical Practice Guidelines and patient self-management tools.
- Engage CHC and FHT networks as ‘Spokes’ of the ‘Hub and Spoke Model’ to build capacity in primary care for the co-management of rare disease patients.
- Review policies and program criteria for complex care service delivery for organizations offering programs for patients with complex needs.
- Allocate personnel as patient navigators (e.g. genetic counsellor, social worker) to assist patients with complex needs and assist caregivers to obtain adequate and appropriate supports.
- For children with complex needs graduating from the paediatric care setting to the adult setting, ensure appropriate clinical transitions are in place to ensure continuity of care.
- Support the development of multi- centre REB protocols (and other such mechanisms) to facilitate exchange of clinical, scientific and regulatory information by researchers
- Continue the work of the Provincial- Territorial Working Group on Rare Disease Drugs to enable access to these therapies with evidence based approaches.
- Explore funding support for acute care hospitals to access expensive rare disease drugs
- Support the development of formalized pathways to facilitate patient connection with clinical trial and research endeavors.
- Explore the potential for dedicated research co-ordination to conduct multi-site research
- Develop knowledge translation strategies to share beneficial research findings among Ontario’s medical community.
- Facilitate government and inter- industry research collaborations to accelerate development of novel therapeutic approaches for rare diseases, and to enhance efficiency and cost effectiveness.
- Partner with research projects for evaluating effectiveness of care delivery, care coordination, clinical management and improved patient outcomes.