Facilitating Quality Research

by Jannine Cody

One of the primary reasons that lay advocacy groups are formed is to find answers. If all the answers, about treatment, management, and life with your condition were readily available, there would be little need for your organization to exist. Sometimes these answers involve treatments, sometimes medical management, but always they are aimed at helping affected individuals live the best life possible. The purpose of this section is to help you to lay out a plan to help your group define your path to the answers.

The challenge is that the path for every group and every condition will be different. This chapter will help you through the process by asking you to answer questions. Your answers to the questions will help you define your research plan. The end of the chapter will present 3 model plans. These plans are not models because they are the best, easiest or recommended. They are just 3 plans that are working well for their organizations and will serve as examples for you to study.

Identifying Your Needs

The way to get the answers is through research. First you need to broaden your idea of research. Research is not just people in white coats and test tubes. Research is just getting answers to questions. These questions could be, "How many people are affected with my condition?" "How many have heart involvement?" "What is the genetic component?" Some of these questions do require a laboratory, but many do not. Those that do not can be directly performed by your organization. You may need advice on creating questionnaires or performing the statistical analysis, but these are the questions that lay advocacy groups are best suited to do.

If you think of the laboratory or clinical components of your research as just bringing in the expertise you need to meet your research goals, then you can give yourself permission to take charge of the process. The biggest hurdle is to give yourself permission to go forward. We hope the information in this chapter will help you do just that.

How to Get Started

1. List as many of the questions as you can think of, including questions from your members. These need not be strictly scientific questions. This list has nothing to do with feasibility, but rather with need and priority. This list needs input from your members and should avoid input from your scientific or medical advisors.
2. Next, give each of the items two rankings, one in order of importance. What is the most important question for your members? Which is the least important? Then rank the same list, but this time put them in order of most easily answered. Which items are the cheapest to answer? The quickest? You may need help from your professional advisory board with this list.
3. Now compare your lists. You should be able too see your priorities emerge. For example, you may decide to focus on one long-term and costly goal and two quick and easy goals.
4. Next look at your long-term and short-term goals. What are the mechanisms that can get these accomplished?

This will depend on many variables.

Are there many researchers already studying your condition or do you need to drum up converts? If there are already many researchers, then finding new researchers may not be the most efficient approach. You may want to try to get the existing researchers to join your consortium.

Is there funding available from NIH to study your condition? Is this funding focused on your condition or just the general group of condition to which your condition belongs? If there are no researchers working on your specific condition, there may so some who are working on related conditions.

What percent of your member ship would need to participate in order to make progress? If your condition is common, then many narrowly focused projects can be supported by your vast membership. If your condition is rare, then you need to have researchers asking multiple questions.

If you do not yet have a scientific advisory board, call every researcher who has done work on your condition. Even if they are no longer in this line of research, chances are they know who is. Call everyone whose name they give you. You will very quickly learn whom you can work with and who will take you seriously.

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