Remove barriers to caregiver access to disease- and treatment-related primary literature. With an improved public literacy and exposure to STEM (Science, Technology, Engineering, and Math) education programs, improved public access to primary data and summaries is important. Parents need the ability to advocate for their child through data-driven inquiry, presently most scientific and medical literature is out of reach to parents and patients unless they pay for access. Give parents the opportunity to access the medical literature, without cost. This may be done by requiring publishers provide open access to back issues, or by giving caregivers free access to primary medical literature through registered portals. Parents of kids with cancer should not need to pay additional costs for publicly funded works.
Idea No. 991