The final research-to-care continuum principles identified and reviewed by the meeting participants follow:
Link the research and healthcare systems and increase research focus on quality of life and health outcomes.
A long‐term investment in research is integral to a successful health system. Investment in research will ultimately save dollars and stimulate the economy. In addition, concrete benefits in quality of life and standards of care are accrued. It is important for the research enterprise to be more closely aligned with health and healthcare both in terms of more targeted development of treatments and better application of existing services.
To focus research, we must:
- Implement and integrate comparative effectiveness research and personalized medicine together
- Increase research on wellness and prevention and make results from failed research available
- Implement health information technology solutions to create a feedback loop from research to care and care to research
- Develop guidelines for public‐private partnerships regarding proprietary information sharing, privacy, confidentiality, and incentives
- Create a clinical trial system that is accessible to potential participants, including access to compassionate use
- Develop evidentiary standards for clinical research
Please share your real-life examples of these principles in the comments section below or email them to healthreform@geneticalliance.org.
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