The Lancet Child & Adolescent Health
Oct 2021 Volume 5 Number 10 p681-766, e39-e43
Citizen science and biomedical research
Dana Mahr, Bruno J Strasser
…Paediatrics, even more than other medical specialties, has long been confronted with the problem that the patient’s voice is often mediated through that of their parent or caregiver. It is a characteristic of modern hospital medicine that the complex patient illness narrative has been replaced by a professional description of signs and symptoms, framed in medical categories. But nowadays, online participatory health research projects such as the COVID Symptom Study once again offer the possibility for patients to freely describe how they feel, outside of scientific and medical categories and vocabularies. Such illness narratives can now be processed automatically by analysing word frequency, as in the present paper, although more refined methods relying on artificial intelligence might better preserve the singularity of the individual patient’s experience. Finally, as with all participatory initiatives, it is important not just to ask what researchers have gained from such studies, but what was the experience of the people enrolled and whether it matched their expectations. Entering data on a smartphone app is not equivalent to discussing with a paediatrician or health-care worker who can answer further questions and concerns of participants, an especially important factor for underserved communities. In the end, the app has no emotive quality, even if those designing it do. Citizen science will continue to require a close interaction with professional medical researchers to turn unique illness experiences into research data.