Home / News /
Research Handbook for Meaningful Collaborations – Children and Youth with Special Health Care Needs
October 18, 2023 – Recognizing the need for more meaningful and inclusive research, the Children and Youth with Special Health Care Needs National Research Network (CYSHCNet), a project generously supported by the Maternal and Child Health Bureau, has stepped forward. CYSHCNet has shared a groundbreaking handbook that is set to change the way we think about research.
This invaluable resource, titled “Lived Experience in Health Care and Health Systems Research,” is a roadmap for building collaborative partnerships between researchers and individuals who have had direct experience with healthcare. It is an initiative that aims to ensure that research is not only important and relevant but also a meaningful experience for everyone involved.
The CYSHCNet Handbook – Overview:
This “how-to” guide dives deep into the dynamics of collaborative research. It serves as a comprehensive guide for researchers, families, and patients, ensuring that their collective input is not only welcome but critical for quality care. The handbook covers the following topics:
- Lived Experience Partners: Offering insights into who they are and why their involvement is pivotal.
- Power Dynamics: A discussion on the dynamics that come into play in research partnerships.
- Inclusivity in Clinical Research: Strategies for engaging, recruiting, and retaining diverse, underrepresented, and underserved children with special health care needs.
- Family-Driven Research: Providing invaluable insights into co-designing and managing research projects.
- Ethics and Evaluations: Covering the ethical aspects and evaluation of such collaborative efforts.
The CYSHCNet handbook helps promote the inclusion of individuals with lived healthcare experiences and it is available for free download.
Please click here to register and access the CYSHCNet handbook.
