Coop’s Citizen Sci Scoop: Patients Who Were Research Subjects and the Doctors Who Listened – the Citizen Science of HIV/AIDS Research

Editor’s Note: Flight MH17 was a horrible tragedy, with many lives lost, including HIV/AIDS researchers en route to a conference.   In Caren Cooper’s latest Coop’s Citizen Sci Scoop, she explains how citizen science assisted with AIDS research, and how AIDS activists were able to become participatory members of the medical and scientific process.  Here, in full, is Caren’s post.

Many prominent people involved in HIV/AIDS research lost their lives when Malaysian plane MH17 was shot down over Eastern Ukraine. HIV/AIDS researchers exemplify how scientists serve the public good. A key to HIV/AIDS research has involved embracing a certain type of citizen science.

The rapid advances in HIV/AIDS treatment in the late 1980s and early 1990s occurred because of major changes in medical research brought about by the lay public. In part, AIDS activists were eager to reform clinical trials in the United States. But equally important, the biomedical research community was (ultimately) receptive to this change.

The term citizen science in this blog is used to describe projects where the public engages in scientific research. It is usually through collecting and sharing observations or by coding data online. Citizen science can also be used more broadly to describe ways that the lay public participates in and influences the practice of science. (Indeed, the term “citizen science” was initially coined by Alan Irwin in 1995 to mean just that).

Oraquick HIV test, photo by Marcello Casal Jr

A colleague recently sent me a 1995 journal article by Steven Epstein. Now a prominent sociologist, his article is a condensed version of Epstein’s dissertation research about the social movement of AIDS activists. (For further reading, see his book).

I summarize Epstein’s research in this post. He examined how AIDS activists became seen as credible agents of the scientific community and developed into important partners to AIDS researchers and government officials in the United States.

In 1981, AIDS was recognized as an epidemic. In 1985, the HIV antibody test became available to the public. People, mostly in their twenties and thirties, were learning that they were infected long before they showed any symptoms. But this was long before any effective treatments were discovered. A positive test result was a like a death prophecy. Some accepted their fate; many others became activists searching for a cure.

In the United States, the group primarily seen as affected by the disease were already seasoned activists in making the public aware of gay identity. The homophile movement of the 1950s was followed by the gay liberation movement of the 1970s. The gay and lesbian community had already “demedicalized” gayness. They had redefined their social status, becoming a legitimate “interest group” in the pursuit of civil rights. They had resources, people of influence, funding, a strong public relations arm, lobby groups, and community-based organizations.

This group understood that the future of their health required a close working relationship with scientists. Anything less would be group suicide. AIDS research involved all types of scientists who had strong credentials, such as immunologists, virologists, molecular biologists, epidemiologists, and physicians. How could the lay public improve their research?

The answer was speed. Initially, AIDS activism focused on the FDA and the desire for more rapid approval of experimental drugs and the ability to obtain unproven treatments from other countries. When none of the existing drugs were working, activists focused on the NIH, seeking more drugs to test. It was in this way that treatment activists influenced not only the design, conduct, and interpretation of clinical trials, but also the speed in which they were carried out. The timeframe for testing the safety and efficacy of AIDS drugs was reduced, counted in months, rather than years. 

Treatment delayed was treatment denied. By 1987, more than 46,000 Americans were infected with HIV and over 13,000 had died from AIDS.

Storm the NIH “die-in” in 1990, National Institutes of Health Library, Branson Collection

To take one example, Mark Harrington, a script writer with no scientific background, epitomizes the involvement of AIDS activists in science. Like other activists, Harrington helped ACT UP to organize demonstrations. In 1988, it was “Seize Control of the FDA.” On May 21, 1990, it was “Storm the NIH.” These protests drew attention, but a more nuanced discussion of scientific practices was needed. Activists did not want to be victims, or be powerless or oppressed. They wanted to help discover treatments, even if that meant trying lots of drugs that did not work. Harrington responded by learning the technical details of AIDS, until he could participate knowledgeably in scientific discussions. By 1992, Mark delivered his first plenary at the Eight International AIDS conference.  He began co-authoring peer-reviewed papers, and continued to publish for years (including, for example, a 2006 paper in PLOS Medicine).

How did Harrington go from street demonstrator to scientific collaborator? AIDS activists like Harrington took a four-pronged strategy to gain credibility and authority.

Activists learned medical language: Abacavir, now used to treat HIV and AIDS, is a nucleoside analog reverse transcriptase inhibitor; photo by Bastique

First, influencing drug testing required a working knowledge of pharmaceutical companies and government. To be successful, the activists had to learn to speak the language of the researchers and learn the culture of medical science. Activists learning about biomedical research found it similar to learning a foreign language and entering another country. Immersion was best. This meant attending scientific conferences, critiquing research projects, even being tutored by scientists. They would read a protocol, learn as much as possible about how the drug is known to work, learn about virology, immune systems, statistics, as well become familiar with the regulations just like an informed patient. Harrington prepared a 50-page dictionary of the vocabulary. Soon activists could talk about viral assays, reverse transcription, cytokine regulation, epitope mapping. Once activists spoke the language, scientists were receptive to discussions.

Second, activists presented themselves as informed, knowledgeable representatives – voices of people who were suffering with AIDS/HIV. Researchers wanted to work with activists too because then they could better ensure that enough people would enroll in their treatment trials and comply with protocols. Activists brokered the relationship between researchers and patients.

Third, activists linked arguments about scientific methodological to moral arguments. For example, early trials were of middle-class white men, but affected populations included injection drug users, people with hemophilia, women, minorities, and heterosexuals. Activists conceived of experimental treatments as a social good to which everyone should have equal access. The history of clinical trials in the United States is full of stories of abuse, lack of informed consent, and people unknowingly exposed to risk and harm. Activists shifted discourse to emphasize the right of human subjects to assume the risks of experimental therapies and to be informed partners in scientific methods. They wanted policy that was credible both morally and scientifically.

Fourth, and perhaps most important, activists were taking sides in debates about clinical trials. Before activists took sides, most researchers performed only randomized, controlled, clinical trials with particular methods that did not allow research subjects to have access to potentially helpful treatment.

People who already tried one treatment would be excluded from tests of a new treatment in the name of “clean data.” But not all researchers believed in clean data. The world, after all, is messy and many researchers thought drugs should be tested in real-world situations.  Activists favored the pragmatic “messy” practice. They feared the “fastidious” practice of clean data from homogenous groups because it prevented terminally-ill patients from trying new treatments.  Activists argued that the only way to obtain clean data in a messy world was to unfairly manipulate and control people. But you could, they and scientist-allies argued, get reliable answers quickly in the real-world if there was a change in clinical trials.

Underlying the four-prong strategy is the basic premise that AIDS clinical trials function simultaneously as research and medical care.

After constant efforts, AIDS activists gained authority, which usually only comes from academic degrees and institutional affiliations. They went from diseased victims to activist-experts. They became citizen scientists.

Today such activists are voting members of NIH committees that oversee drug development.

They are representatives at FDA advisory committee meetings where drugs are considered for approval.

They serve on institutional review boards of hospitals and research centers.

And, like many of the passengers on Malaysian Airlines flight 17, they fly to global conventions on AIDS research.

Categories: Citizen Science, Health

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About the Author

Caren Cooper

Caren Cooper

Dr. Caren Cooper is an associate professor in Forestry and Environmental Resources at NCSU in the Chancellor's Faculty Excellence program on Leadership in Public Science, and assistant head of the Biodiversity Research Lab at the North Carolina Museum of Natural Sciences. She is co-editor-in-chief of Citizen Science: Theory & Practice, a journal of the Citizen Science Association. She has authored over 50 scientific papers, co-developed software to automate metrics of incubation rhythms, and co-created NestWatch, CamClickr, Celebrate Urban Birds, YardMap, and Sparrow Swap. She is a blogger with SciStarter, and author of Citizen Science: How Ordinary People are Changingthe Face of Discovery. She likes to propel herself on one wheel, two wheel, and eight wheel devices. Follow her @CoopSciScoop. She hosts periodic Twitter discussions with panelists at #CitSCiChat and runs @IamCitSci, a Twitter account with rotating weekly guest hosts.