Who Decides What Will Be Studied?
This deceptively simple question lies at the heart of many of the disagreements that take place early in research partnerships. This question also gets at the heart of ethical issues that emerge in partnerships.
Too often in research, researchers already know what they want to study before they even contact the community. The researcher may have spent a great deal of time studying a particular problem (asthma, water contamination, gang violence, the homeless, poverty), knows the research literature, and knows which issues are seen in the research community as the most important to be studied now. Linda Silka here: As a researcher myself I like to think that I have much to offer based on past work I have done and based on my understanding of the literature. The problem, of course, for me and for other researchers is that we may be learning only to each other and not to the community. Our sense of the problems that need to be studied are being shaped by one perspective (that of the community of researchers).
Stop for a minute and consider what most graduate training is like: Many graduate students are in the process of thinking about doing a thesis or project. When they are deciding about a thesis topic and a research problem, we can look at who they talk to, where they get their information, and what literature they read? Chances are the graduate students are developing their ideas by thoroughly immersing themselves in a research literature. Only after doing this and formulating a research problem (perhaps even a hypothesis), do graduate students start to think about who in the community might work with them on this research issue. The upshot: The structure of much research training often encourages researchers to get pretty far along in the research process before they consult those who might be “studied” in the research.
Consider the vacuum cleaner study: Consider the following vacuum cleaner study (odd name but we are not sure what else will describe it). Below is an example to help us think about the issues that emerge at the start of partnerships in terms of hypothesis generation:
Suppose we have an asthma trigger vacuum cleaner intervention study (wow, long name!). In this study, researchers have seen that the literature points to the possibility that the use of an expensive HEPA vacuum cleaner used in a very specific way (vacuuming the child’s room) will reduce asthma triggers and will reduce asthma attacks among children living in poverty. The research hypothesis, informally stated, is that high tech vacuum cleaners used in a particular way will significantly reduce asthma triggers. If we step back from this hypothesis and imagine the partnership working differently, this framing of the problem of what causes asthma attacks:
1. Assumes that the families are not now using this kind of vacuum cleaner or something similar.
2. Assumes that the planned procedure makes sense to the families.
3. Assumes that children have their own bedroom and that this bedroom is separate enough that the cleaning of it can be maintained.
4. Assumes that families would have the time and resources to continue this procedure if it is found successful.
5. Doesn’t develop the plan out of an understanding of the daily lives of the families.
6. Is focused on testing a hypothesis rather than testing an intervention that is robust, reliable, and works for the families involved.
The million dollar question, of course, is how to integrate good science and science that matters! Research training encourages us to move pretty far along in the formulation of the research problem before consulting the community. What is missing with many of these approaches is the partnering of community knowledge and research knowledge—and partnering these types of knowledge early and often. We should be talking to each other at the beginning, middle, and ends of research cycles, and continue to do so.
In this vacuum cleaner example, researchers have seen that the literature points to the possibility that the use of an expensive HEPA vacuum cleaner used in a very specific way (vacuuming the child’s room) will reduce asthma triggers and will reduce asthma attacks among children living in poverty. The research hypothesis, informally stated, is that high tech vacuum cleaners used in a particular way will significantly reduce asthma triggers. If we step back from this hypothesis and imagine the partnership working differently, the problem of what causes asthma attacks might be framed differently.
So, let’s approach this problem differently. In your partnership, which of the following might work to formulate the research problem so that it integrates good science and science that makes a difference? What would you change to make these work? What assumptions about partnership are you making when you assume that these would work?
Suppose a researcher made a presentation to a community about the latest research on asthma triggers and included in the presentation questions asking whether people thought this kind of intervention would work.
Suppose the head of public housing came to a group of researchers at a university to discuss worries about the high rates of asthma among children living in public housing.
Suppose an asthma coalition made up of community members and researcher meet regularly to talk about asthma problems in the community and decide together what needs to be done to address the problem.
Suppose a researcher held a focus group with parents living in public housing whose children suffered from recurrent asthma attacks in order to present a series of ideas about possible interventions.
From your perspective, of these approaches captures the idea of research partnership? How would your partnership move toward the hypothesis generation stage?
Some take home points:
In the past, it has usually been the researcher who has decided what will be studied.
Because researchers are generally more focused on answering questions than on developing effective interventions, the research may neglect questions of whether the research lends itself to application.
To put it colloquially, a lot of water has already gone under the bridge before researchers consult with the community. Most researchers are used to involving the community only after they have fully immersed themselves in the existing literature.
Many opportunities are being lost because research is being generated without all of the knowledge that both partners (community and researchers) can bring to the problem solving enterprise.