Your voice matters. As a community activist your voice is needed when it comes to medical research, especially when researchers are recruiting trial participants from your community or trying to address health issues that impact your community.
Sitting at the table for the first time, however, can be intimidating. Many years ago, JD Davids put together these tips for Project TEACH, with help from Charles Nelson, Kiyoshi Kuromiya, and Jane Shull. These tips remain as relevant today as they were when they were first written.
1. Remember the people who aren’t in the room: You are there to represent your community, not to impress the other people at the table. You must be clear about what your community needs and wants, and report back information to people who are not there. If you are sitting on a scientific committee designing research, you don’t have to be a scientist — you need to think about and talk about how their research will affect your community. Don’t be afraid to go back and ask your community what they think.
2. Set goals to focus your participation: Your homework is to know the issue, and figure out how it affects you and your community. What can this group or committee do about this issue? Your goals must be clear, wellthought out, and possible for this group of individuals to do at this time. You can have goals for each meeting, and overall goals for the committee’s work. What goals must be met, and what goals are you willing to compromise in order to win the most important things? Discuss these with your contacts and supporters. If you learn more or situations change, look again at your goals and change them if necessary.
3. Be truly present: You need to be there physically, mentally, and emotionally. The first key to this is showing up. Go to all the meetings. If they do not meet at times you can attend, demand that the times change, or find someone else to take your place. If they communicate through conference calls, be on all the calls, or you may miss important information.
Listen to everything. It is not helpful for you to demand an answer to a question that was already answered 10 minutes ago. Try your best to keep track of the conversation. If you ask a question, you must listen to the answer — do not assume you know what they are going to say. It is very easy to get distracted, especially on conference calls. Try to notice when you are not listening, and learn to concentrate on what is going on. Bring a tape recorder if you have trouble remembering the details or taking notes, and review it later.
Stay awake. If you find yourself getting sleepy, stand up or walk around if possible. Go to the bathroom and splash cold water on your face. Don’t load up on coffee and sweets — it can just lead to a crash. Snacks like nuts and fruit can give you a better energy boost.
Focus on what you do understand, not what you don’t yet understand. It is easy to become discouraged, but remember that you have support and can learn. Picture ideas in your head at first, rather than trying to write down details, especially with scientific and treatment issues.
4. Make all your comments and get your questions answered, sooner or later: You always have the right to ask questions. If you do not understand something, and no one is helping you, interrupt the meeting and demand an explanation. If you have a comment to make, do not let the conversation or meeting end until that comment is made.
If you ask a question, and feel that it was not answered all the way, point that out. If you still feel like you are getting the run-around, you have to make a decision — should you continue to interrupt the meeting, or will you give up for now and get your answer later from one of your contacts? Either decision is the right one at different times — it will become easier to tell with experience.
If you are not sure of how to say something important or sensitive during a meeting, make yourself a note. Then work with your contacts and supporters afterwards to write a letter to all the committee members, stating your position, and email or fax it to them or bring it to the next meeting.
Don’t be afraid of disagreements, even with your contacts and allies. A good working relationship can include arguments, so people know where you stand and that they can’t walk over you. Do stay open and honest without making personal attacks.
Sometimes you may have to pick your battles, and let things go if you can get an answer outside the meeting, or come back with a stronger suggestion or proposal next time. Remember, you are there to meet your goals, in order to help your community. If you call someone a “murderer” the first time you have a minor disagreement or because they say something dumb, they may never listen to anything you say again. Some people will say ignorant or offensive things to distract you from the real issues — don’t fall for it.
Avoid making up facts and figures. You may get caught. If you are pretty sure, say “I think that…” or “I believe that…”, and hope that someone else in the room can back you up. Or write a note to a contact near-by, asking if they know and can make the point. Sometimes you may need to bluff to bring out an important issue or make a point. You can act like you know the details without saying any. Use words like “approximately,” “about,” or “roughly” to describe your best guess, as in “About half the people dropped out of the study because of side effects. Obviously there is a problem here.”
5. Get in on the details. Most of your goals may be for big issues and decisions. But smaller things can make a large difference, too. Sometimes the people who write the final wording of a policy or decision have the most power. Do not give your okay for a general statement and go home — help write it, or demand to see a copy before it is made final or sent out!
