Precision Child Health Partnership (PCHP): Recipe for a successful collaboration / Partenariat en santé de précision pédiatrique : la recette d’une collaboration à succès

Canada benefits from a high-quality, publicly funded healthcare system in which  specialized pediatric hospitals collaborate, enabling the development of a strong research  culture dedicated to improving health outcomes for all. Nevertheless, patients and  caregivers continue to face challenges associated with fragmented care and healthcare  systems that remain divided by provincial and territorial jurisdictions. Cutting-edge  diagnostics, innovative treatments, and clinical trials are typically accessible only in a  limited number of centres. Governments must contend with rising healthcare costs while  keeping pace with innovation. Families of children with rare or complex conditions face  prohibitively expensive therapies that are out of reach when not covered by publicly funded  health plans, private health insurance or personal resources.

Recognizing that no single institution can solve all these challenges alone, Santé Québec – CHU Sainte-Justine and The Hospital for Sick Children (SickKids) joined forces in 2021  to establish the Precision Child Health Partnership (PCHP). This partnership brings  together two of Canada’s largest pediatric hospitals, which collectively serve nearly 60%  of the country’s pediatric population. Operating across two provinces, Québec and Ontario,  two legal systems, and two official languages, the PCHP has developed an effective model  for inter-jurisdictional research collaboration. Our shared goal is to address diagnostic  odyssey and barriers to accessing innovative therapies, both of which contribute to a  disproportionate use of healthcare resources. By leveraging cutting-edge technologies and  data sharing, we aim to enable integrated and personalized care pathways for patients and  their families. 

Path to success. Rapid advances in health technology and cost reduction are bringing  within reach a new model of patient care, one that Canada is well positioned to accomplish. This transformation is driven by our growing ability to understand and target molecular 

abnormalities and make more precise diagnoses and innovative therapeutic approaches, paving the way for earlier interventions and better health outcomes. 

Collaboration such as the PCHP requires long-term commitment and sustained investment.  It cannot truly flourish without the unwavering support of our Foundations and the courage  of philanthropic donors who are willing to invest in bold ideas before their impact is fully  measured. Thanks to the visionary leadership and catalytic investment of the Azrieli  Foundation, the PCHP has evolved from an ambitious vision to a whole new level of collaboration with the potential to be truly groundbreaking. CHU Sainte-Justine and  SickKids bring different histories, governance structures, funding streams, languages and  culture. Instead of being obstacles, these differences, combined with a critical mass of  scientific expertise, give rise to an entity that neither institution could have created on its  own, as they come together with a shared momentum in a favorable context. 

Prepare and plan. Investing in a pre-launch period (2021-2023) to develop legal, ethical  and other frameworks has been a critical solution to successful PCHP implementation.  While this preliminary phase may seem less exciting and tangible, it is also where the  strategic vision is developed and mutual trust between institutions is established, catalyzing  successful projects down the road. Careful preparation is essential, as system-level change  does not happen overnight, and governments and funders who want pan-Canadian  collaboration to thrive, need to resource this preparatory work explicitly, rather than treat  it as unnecessary spending.  

Institutional alignment. The PCHP is anchored in a highly collaborative federated model  that balances joint strategic oversight with institutional autonomy. An integrated governance ensures inclusive decision-making and alignment on shared priorities, while  preserving each institution’s operational structures and policies. This model was  formalized in the PCHP Master Agreement, including a Project Agreement Template designed to streamline and accelerate the initiation of new research collaborations. These  documents were designed from the outset to provide a scalable model, enabling future  adoption, by other institutions across Canada, to the partnership.  

This alignment extends beyond our mission and is embedded in our operational structure.  Establishment of a common Objectives and Key Results (OKRs) framework has been  crucial to ensure a transparent approach, strategic alignment, advancement monitoring and  mutual accountability. Progress is reviewed through regular work-in-progress (WIP) meetings, enabling teams to identify opportunities, address challenges, and adapt as needs  evolve. Since the official PCHP launch in 2023, operational teams have met weekly to  maintain close coordination, contributing to a sustained engagement, fundamental to the vitality and growing impact of our partnership. Among our achievements isthe deployment  of major joint institutional projects, including DECODE(u)R and Oncogenomics, to  evaluate the clinical utility of emerging sequencing technologies for rare and ultra rare  diseases as well as cancer. Other important programs, such as ASO Connect and  PINPOINT, accelerate antisens oligonucleotides (ASO) therapy development.  Additionally, over 20 collaborative research projects were funded, with some of them being  proof-of-principle projects to support data sharing across institutions, while two symposia  were organized, and more than 10 scholarships were awarded. 

Institutional and public trust. Through the collective commitment of our institutions, we  are building a strong collaborative ecosystem ensuring lasting impact. This commitment is  particularly evident in our joint Patient, Family and Community Committee, which  brings together patient partners and advisors from both SickKids and CHU Sainte-Justine.  Through this unique collaboration, patients and families play a meaningful role in shaping  research priorities, guiding decision-making, and ensuring that the knowledge generated  translates into tangible benefits for children, youth, and families. 

In the end, while governance structures and strategic plans provide direction, it is skilled  and dedicated individuals who transform vision into action. One key solution proposed by  the PCHP is a team structure that intentionally combines scientific leadership with  operational expertise. By uniting caregivers, researchers, project managers, legal experts,  and patient engagement specialists across institutions, it creates the essential “mayonnaise”  that binds collaboration together. It’s by fostering trust among stakeholders and providing adaptability that we can navigate scientific, administrative, and cultural environments,  thereby enabling pan-Canadian innovative partnerships. 

The Precision Child Health Partnership is made possible by the transformational support of the Azrieli Foundation. We  also gratefully acknowledge a key contribution from the Pathy Family, along with the generous support from the Birks  Family Foundation.