An Assay is a Test
Or How to Talk to Real People

PROJECT TEACH IS A program at Philadelphia FIGHT, to train HIV+, low income men and women about treatments, health care issues, and advocacy, in their work as peer educators and activists. TEACH members have consistently identified the need for doctors, other clinicians, researchers and treatment activists to speak in a language they can understand. It is up to staff to make a"first-cut" translation of research language into a usable form to our peer educators, who then take the information to our communities.

In the process, we have developed some basic guidelines for simplifying language. We hope that more AIDS activists can engage in this process, and that we can share our information and experiences.

Here's an example:

Researchers Say

"Advanced maternal disease stage during or soon after pregnancy and immunological deterioration associated with low CD4s have been associated with increased transmission. However, worsening disease or immune status may be surrogates for high viral load rather than risk factors themselves."

• We hear:"...blah, blah, pregnancy, blah, blah, blah, viral load".

Advocate Language

"There is a bigger chance that the baby will get HIV if the mother is in the late stages of HIV disease during or right after pregnancy. We do not know if this is because her immune system is weaker (low CD4 count), because her disease may be getting worse and she is ill, or because there is more HIV in her body. Some researchers think that a large amount of virus in a woman's body could be what raises the risk of the baby getting infected, not a low CD4 count or sickness."

• The most direct route to understandable information is for clinicians and researchers to learn to do their own translations. And to work with people living with HIV and other activists to get information out where it is needed.

  Treatment activists and others with access to cutting edge treatment information use early and incomplete data, and personal contacts with researchers, when making their own treatment decisions. People of color, women and poor people living with HIV deserve equal access.

  For example, there is a large and growing amount of research that gives us information on perinatal transmission of HIV, besides the ACTG 076 study. But you wouldn't guess it from any of the information the government and private organizations are giving to women with HIV and the doctors that treat them.

  Women living with HIV need to be included at ALL levels of research decision-making. With training, we can start to understand the peer-reviewed journal articles and scientific presentations. And we are the ones who can best communicate to other women about the FULL range of published and on-going information on prenatal care and other treatment options.

  Now that the importance of peer education has been recognized, and occasionally even funded, there is a growing number of poor people, women, and people of color living with HIV who know the basics of HIV, treatments, clinical trial structure, and so on. We believe that these intelligent, dedicated individuals must be offered additional training and support to scale the walls of research culture.

  Researchers must do all they can to reduce the learning curve faced by this new generation of activists. We present the following suggestions for medical/scientific presentations.

Presentation Structure

• Introduce and outline: These guidelines are the same as ones given to our TEACH peer educators: state the main purpose of your presentation, pick 3 main points, introduce them, make them, and summarize them. And do it in plain language, even if the rest of your language is more technical. It will create a context for people to learn what words go with what topics.

• Identify what type of information you will be giving: Research presentations combine many types of information: anecdotal stories, citations of past research, untested hypotheses or"best guesses," and statistically-significant research, to name a few. People living with HIV need to be told what kind of information is being presented, so they can make their own decisions about its relevance. For example, to describe a summary of past, ongoing and proposed research, one might say,"We know some of this information because we had clear results when we studied it. Other information is based on hypotheses. That means we think it may be true, but we need to do research to find out if we are right or wrong."

The Language

• Speed of speech: We (clinicians, researchers and activists alike) talk too fast. Talk slower, and apologize ahead of time, because you probably won't.

• Evaluate the need for specialized language: Scrutinize language and only use technical terms when it is absolutely necessary. If it is necessary, define it. An "assay" is a test, just say "test." A "log" is a factor of ten, you add or remove a zero; explain and demonstrate this process.

• Latin is a dead language: Take out all Latin terms, or explain each and every one. In vitro, in vivo, in utero, ad hoc... ad nauseam! Offer helpful tips, like "t" in vitro can stand for test tube.

• Prefixes and suffixes: They may save time, but they may not make sense to others. Don't use them unless you feel it is absolutely necessary. Pre and post = before and after. Perinatal = during pregnancy and labor.

• Abbreviations are a shortcut to confusion: Abbreviations are even more common than acronyms in this line of work. Recently, a doctor gave a pretty good talk on antiviral treatments for a non-scientist audience. But then he slipped into medical-ese with the "BID" thing. Just say "two times a day". It's fast, easy and understandable."PCR" -- no one cares what it stands for. It's a viral load test. Don't forget the a.k.a., also known as. It's true that a viral load test is a PCR test. But so is b-DNA and HIV-RNA. Unless it is important to differentiate, name all the terms when the first example comes up, define the meaning, and then stick with the term in most common use for the rest of your presentation.

Impact of Words

How do you present death, mortality rates, survival data? Step back and think before you present. Or better yet, ask people living with HIV! We are not asking for sugar-coated euphemisms, but cooperation in doing everything possible to help us follow along and participate, rather than getting really angry at the presenter or overwhelmed by our own mortality. The culture of the research profession can seem callous or absurd. What is so "elegant" about a study that confirms the pain and suffering of people with HIV/AIDS? People are people, not objects or subjects. Do "people fail drugs", or do drugs fail people? You are talking about us. Is it "mothers infecting infants," or "the transmission of HIV from mother to infant?" We can hear guilt or blame, even if the presenter doesn't mean it that way.

Graphs and Charts

One of the promising things about the culture of scientific information is that it is visual. You are more likely to see visual explanations in scientific presentations than in informed consent forms. Some use pie charts to explain concepts of study arms and randomization that happens in clinical trials. Graphics are useful tools for visualizing information. But people need the language to de-code them.

• Define your terms: What is your x-axis, your y-axis? Time? CD4 count? If you are using more than one scale at once (like a spectrum of disease graph that shows CD4 change and viral load change), explain that, too.

• Model the information: If you have a series of graphic slides, use your first slide to demonstrate what you want people to see." Each dot is one person's viral load count before they started taking the drugs. Where the dots are the thickest is where most people's viral load counts were." Don't forget to introduce your main point, show some specifics, and then re-state your point. This is especially important with a chart with a bunch of columns and numbers.

• Qualify the information: It is very important to stress that research is often based on averages, and does not paint the picture of what will happen to every person living with HIV." This line shows the change in people's CD4 counts over 12 months, if you take the average of every persons' results. It does not show what happened to any single person, but can show us what might tend to happen."

• In summary, we believe that it is very important to work to bridge the cultural and informational gaps between researchers and the majority of people living with HIV. We want to work with individuals and programs that are interested in these issues. It was a lot of work to translate about 2/3 of Dr. Mofenson's speech, and it still has not been adequately field tested and revised by women living with HIV to know for sure if it is clear and useful. It would be great to join together to create a set of up-to-date, understandable information for researchers and community folks alike.