Innovation Digest – November 2021 Vol. 1

Lived experience is a powerful resource. Patients, families and caregivers have insights about goals, impact of care (or lack of it), and the social needs that make health possible. If we acknowledge that patient experience is important, then why are we notoriously bad at measuring and including such data in our research, our care delivery and our payment strategies? The excuse that “it’s complicated” should no longer be an acceptable answer. Patients from across disease communities are leading research and working with regulators to redefine when and how patient expertise informs everything from new therapies to the design and deliver of health benefits. It’s a promising trend.

In this issue:

  • For people with sickle cell disease, add check-ins to checkups
  • The Key to Addressing Rising Health Care Costs Is Patient-Centered Evidence
  • Management of High-Need, High-Cost Patients: A “Best Fit” Framework Synthesis, Realist Review, and Systematic Review
  • First-Hand Perspectives in Rheumatoid Arthritis
  • FDA, NIH, and 15 private organizations join forces to increase effective gene therapies for rare diseases
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