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Researchers must listen to vapers who say, “Nothing about us without us”

Years ago, at a global health research meeting, I remember one of the speakers complaining that researchers from high-income countries often “behave like a flock of seagulls” when working in low- and middle-income countries. She explained, “We have an ethical obligation not to fly in, collect the data, and then fly back out again, leaving behind only…what flocks of seagulls leave behind.”

A recent paper in the Harm Reduction Journal, “What is the value of peer involvement in advancing tobacco harm reduction?” makes a strong case that e-cigarette users (vapers) should be more involved in research—and that researchers should encourage and embrace their involvement—to help guide the research agenda for tobacco harm reduction. The paper, by UK researchers Caitlin Notley, Sharon Cox, Sarah Jakes, and Louise Ross, sets off on the right foot by acknowledging vapers as “peers.”

The value of peers in research is their lived experience…[and their potential] to identify emerging themes that to researchers may be simply ‘lost in the noise’, and further analysis can provide novel avenues for investigation which otherwise might be missed.

In other words, whether scientists are studying users or the products used, they should welcome vapers as “peers.” They should listen and try to understand vapers’ stories and learn what research questions are most important to them. This imperative echoes the effective call in the 1990s from the HIV+ community: “Nothing about us without us.” However, vapers are not sick, and this analogy is problematic for a zillion reasons. Still, the echoes reverberate. In fact, Sarah Jakes used this very phrase during the 2017 E-Cig Summit.

Additionally, in the high-income world, where smoking rates have declined to 15% in some countries, and the lowest smoking rates are among the most highly educated, it is plausible to assume that most tobacco control researchers are non-smokers or never-smokers. It is also reasonable to wonder whether those researchers can truly understand the lived experience, “the smoker’s journey,” or the complexities of behavior surrounding tobacco harm reduction.

Participatory research

Back in 1995, Andrea Cornwall and Rachel Jewkes reviewed then-novel participatory research methodologies in Social Science & Medicine. Their paper, “What is participatory research?” described the paradigm shift underway at that time:

Research strategies which emphasize participation are increasingly used in health research. Breaking the linear mould of conventional research, participatory research focuses on a process of sequential reflection and action, carried out with and by local people rather than on them. Local knowledge and perspectives are not only acknowledged but form the basis for research and planning.…The key difference between participatory and conventional methodologies lies in the location of power in the research process.

Today, participatory research and community engagement are far more common in global health research. When I served as Director of Child Health at the Optimus Foundation in Zurich, Switzerland, almost all of our 100+ grants supported community-based, participatory child health, education, and child protection interventions in Latin America, Africa, the Middle East, and Asia.

So, I want to applaud Notley, Cox, Jakes and Ross’s call for stronger engagement with peers in tobacco harm reduction research. Based on my own career-long experience with grantee projects in low- and middle-income countries all over the world, I believe this: The most effective innovations and solutions often come from the experts—including local researchers and community members—in the place where the problem exists. Community members are THE experts on their own highly individualized personal, socioeconomic and cultural context.

The most effective public health researchers engage with the people they are studying, treat them with respect, as peers, and involve them from the start in the design of research protocols. Researchers then have an ethical obligation to deliver their findings to the communities and participants in understandable, jargon-free language. As Notley, Cox, Jakes and Ross argue, peers should be involved even at the start, in the elucidation and prioritization of research questions.

A global health imperative

As I write this, a Google Scholar search for the words “e-cigarette” or “vaping” yields nearly 10,000 scientific papers. Only about 2,000 of those papers even mention “vapers” or “e-cigarette users.” Without an exhaustive assessment or sampling of these papers, I will just take a stab and guess that only a tiny fraction of these papers involved real smokers, ex-smokers, and vapers as peers in prioritizing the research questions, and developing and implementing the protocols.

I have given talks over the years, and even published with the current president of the Foundation for a Smoke-Free World, highlighting this problem in global health research. To put it bluntly, there is a tendency among some researchers from high-income countries to assume that they know what’s best for the vulnerable people they study in low-income countries.

The voices of patients (those at risk and those who suffer) must be heard. Tobacco harm reduction advocates should seek common cause with patients’ rights advocacy groups—especially those focusing on lung cancer, heart disease, and chronic obstructive pulmonary disease (COPD). My own father died from COPD after smoking 2 packs a day for most of his life. This is a very personal issue for me.

Global investments in tobacco research today are almost all funded by organizations predisposed to find and measure harms and to deny harm reduction options. The result is like a flock of seagulls. What this leaves behind for the world’s 1.1 billion smokers, 300 million smokeless tobacco users, and 40 million vapers is—to say the least—not ideal for public health or for global efforts to reduce tobacco-related disease and death. The “value of peer involvement in advancing tobacco harm reduction” is clear.

Category:  Research

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