If you are a responsible consumer advocate who wants to help shape the research agenda, you have many ways to contribute.

First, acknowledge your value. Many scientists left to their own devices might sit in the lab and not seek out consumer advice—yet when they meet us at conferences or meetings, they love to hear what we think of their work, how they can expand their research and how it might affect us as survivors. We bring a unique perspective to the work that they do—and they value that!

Know the Steps: How to Advocate in Research

Your Agenda: Decide what research questions you want answered—and create your own research agenda. Start by looking to advocacy organizations you trust—for example, YSC’s research agenda. Read up on the issues and decide what questions scientists should ask to improve the lives of young women affected by breast cancer.

Find a Partner: Look for a researcher or researchers asking questions similar to the ones that inspire you. AHRQ or Cochrane Collaboration offer a good source, but sometimes a general Google search on the question will bring up a list of researchers with similar interests.

You can also find them at scientific meetings. If you take time to walk through the poster discussions or if you hear a speech that interests you, approach the presenter and talk about the questions that interest both of you. Researchers enjoy discussing their work with consumers, so feel confident that your perspective and questions matter. Once you find a researcher with similar interests, talk about your goals and see if you might develop a fruitful partnership.

Trials: Your advice and perspective matter—you can help researchers design a trial to answer the questions important to you. Always remember that you are a valuable member of the team. Do not give your support if you feel you are undervalued.

Funding: Researchers might ask for your help when seeking funding for their research studies. This gives you a great opportunity to use your judgment about what research will benefit young women facing breast cancer. Ask yourself if the researcher’s study needs to happen to help solve an important, overarching problem. If yes, read on in number 5, and get started advocating for a meaningful study. If the answer is no, move on to more important work.

Making the Best Pitch: Use your perspective and experience to help the researcher make the best possible funding pitch for this valuable study. You can help by giving a fresh point of view. If your name is attached to the document, you want to help make it the best it can be.

Read the researcher's application for funding and the funding agency's description of the award. Make sure the application addresses all the award’s requirements. If the award requires consumer participation, make sure you’re participating in the right way. The people who grant these awards craft their requirements carefully and expect applicants to pay attention. You can do researchers a big favor by helping them meet all the details. You should participate fully.

Consumers should pride themselves in serving as full members of the team. If the researcher just wants your help with meeting requirements, they are missing a large opportunity to involve you in framing the research question, study design, informed consent and data analysis. Your full participation will give the researcher an advantage over others applying for the same grants.

Use Important Information: Ensure your researcher’s application makes the best impression by only including relevant information. Remove obvious statements—if it appeared in the NY Times or other popular publications, the peer review panel likely already know the information and it’s wasting space on the application.

For example, everyone involved in breast cancer research knows that 240,000 women are diagnosed with breast cancer each year and 40,000 women will die of the disease. Don’t use space to state the obvious. Focus on interesting information that truly makes a case for why this proposal meets the funding mechanism specifically.

Consumers should prioritize which projects are most urgently needed. They should focus and work on only those projects. When they lend their name to a project, they need to lend their expertise, so they should only work with researchers who are truly interested in and open to the consumers' point of view and their holding an active role in the project.

The research question should have the potential to solve a large problem and perhaps change the status quo, or lead to different important questions if proven true or false. We as consumers give so much of ourselves. Our time is valuable. Our insight, opinions and point of view are essential and we should always insure that we are spending our time in the most effective way.