Patient-Centered Research & Protocol Design
I'd love to discuss how people are using/interpreting the concept of patient-centered research* and protocol design to enhance recruitment and retention.
In essence, how do we engage patients and providers from the design of the scientific question, through the design of the protocol (including the schedule of events/procedures), to ensure that the question is relevant to
- The way patients live with their diseases and disorders,
- What's important to them in terms of treating their disease (e.g. curative, disease modification, slowing disease progression, improving function and quality of life, etc.)
- The providers that treat them and the role they aspire to (scientists practicing the best evidence based medicine)
and will provide answers that will help improve the quality of their lives.
Please share your thoughts and ideas, the relationships you are building (or plan to build) with patients, advocacy groups, communities of providers, etc. so that we can move beyon the crisis that the clinical research enterprise is facing.
*See the Patient Centered Outcomes Research Institute at www.pcori.org.