More and more, patient groups and advocacy organisations are having an active role in scientific research. This can vary from data contributed to a study, to taking an active role in deciding the direction of an investigation. As political scientist Jack Stilgoe writes for UK newspaper The Guardian this week, patient groups that are unhappy with the state of scientific research are adopting different approaches to push through the developments they need. 

“Like many patient groups, the Alzheimers’ Society isn’t happy with the state of scientific research,” he writes. “Using donations from members of the public, it funds its own science to fill in gaps and speed up the development of treatments.”

“But as well as using its members’ money, the society also makes use of their expertise. The science supported by the Alzheimers’ Society follows an unusual model. At every step – defining research questions, doing the research, analysing the data and measuring the impact – the patients and carers who are affected by memory loss are involved as so-researchers.”

Jack describes this as a “radical twist” on the traditional conventions of medical science, and much of his article focuses on just how tricky it is to strike an effective balance. “The scientific establishment is outwardly enthusiastic about this sort of thing taking place at the margins of science,” Jack writes. “But behind the scenes fears remain that giving citizens the keys to the ivory tower is a recipe for bad science. These questions are not going away. What has come to be known as ‘citizen science’ is on the rise.”

Citizen science is a highly diverse phenomenon, from the RSPB’s Big Garden Birdwatch (more British than tea, crumpets and the bake off) to the Galaxy Zoo project that leverages the power of 100,000 volunteers to analyse pictures of distant galaxies. These enterprises are fun. They allow participants to “learn and play,” Jack notes. In the genomics space, biohacking is another example where citizen scientists have taken technologies like CRISPR, and are applying them in all sorts of wonderful ways. 

However, “for patients, especially those with rare diseases, science is a more serious business,” writes Jack. When we spoke to patient advocate Andrea Downing for a past issue of Front Line Genomics magazine, getting involved in research wasn’t a “fun” project for her and the cancer community, but a vitally important step in driving forward scientific development. But as Jack explains, citizen science often plays by different rules to conventional approaches, and this has many people uneasy. Without the same rigorous controls, it is argued, the risk of producing bad data and thus worse outcomes for patients, is far greater. 

“Proponents of citizen science are often met with the argument that it produces poor quality data,” Jack explains. “Some university scientists might respond that their quality control isn’t that great either. But this would be to miss the point that citizen science often plays by different rules – different motivations, different standards of evidence and different thresholds for action. For people in search of new treatments, clean water or political attention, the purity of a scientific laboratory may be a problem rather than an ideal. Citizen science asks us to rethink our assumptions about good science. In areas where there is a clear sense of a shared project, citizens may demand radical openness in data. For others, trust may be a problem and the sharing of information needs to be handled with great care.”

Read the full article, “Is citizen science the future of research or a recipe for bad science?, here.

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