The first workshop I attended on Friday was called Good Science, Effective Advocacy: Learning about Research and Helping to make it Happen. This workshop focused on exploring the impact of legislation on treatment and research, and learn how to become a breast cancer advocate.
The workshop defined and offered basic instruction on randomized trials and observational studies and explained why they work the way they do to help you gain a better understanding of evidence-based health care and research and promote your own medical care.
One of the most important things that I learned in this workshop was that breast cancer patients can impact what studies are done when they are involved in advocacy. Patients now can have a say, where not too long ago the patients never played a part in this process.
How can advocates make a difference in the research process?
- Participate in a clinical trial
- Clinical trail education and recruitment
- Legislation and funding - Federal and State
- NCI and FDA patient programs
- Study Sections (These can impact what studies are done)
- Institutional review boards
- Data and safety monitoring board
- Private foundations
- Pharmaceutical advisory boards
These are also some resources to get you started being a breast cancer advocate:
- Project LEAD
- NBCC Annual Conference
- Koman Annual Meeting
- Koman Champions for the Cure
- NCI CARRA program
Becoming an advocate is something that can be very fulfilling and meaningful. Let your knowledge build and slowly see what your strengths are and go in the direction that best suits you. Advocacy gives patients some say in what studies move forward. Patients getting involved have dramatically impacted the research process.Permalink | Email this | Linking Blogs | Comments