As part of our efforts to ensure that families are engaged in policymaking at all levels of the health care system, the Lucile Packard Foundation for Children’s Health now requires that family members have a meaningful role in all grant-funded activities. Project budgets must include compensation for these roles.
Transforming the system of care for all children, including those with special health care needs, cannot be done without engaging families as full partners in the planning and implementation of health care policies, programs, and individual service plans.
Supporting appropriate compensation of family experts encourages equal partnership throughout all stages of grant-funded projects, builds capacity for diverse representation of family members, reduces barriers to participation, and demonstrates the value of the parent voice.
We encourage all individuals and organizations working to improve the health care system for children and families to join our efforts in promoting the representation of those with lived experience at all levels of health care decision making, policy, and research.
How to Get Started
Families: Request reasonable compensation for expenses such as parking, travel, time spent, and childcare costs.
Health care researchers, advocates, and non-profits: Ensure that adequate compensation and incentives are offered for recruitment and participation.
Funders: Include a question in the grant proposal process about how family members will contribute to the funded activities. Require grant applicants to include compensation for participation in their grant budgets.
Legislators, policymakers, and government agencies: Make compensation for families a priority to ensure their meaningful engagement in advisory groups, stakeholder groups, and work groups.
Learn More about Family Engagement
Below are some additional resources on family engagement.
- Engaging Families in Improving the Health Care System for Children with Special Health Care Needs
Lucile Packard Foundation for Children’s Health
- A Framework for Assessing Family Engagement in Systems Change
- Compensation Guide for Youth & Family Research Partners
Children and Youth with Special Health Care Needs National Research Network (CYSHCNet)