Citizen science and biomedical research

The study in Lancet Child & Adolescent Health by Erika Molteni and colleagues1Molteni E Sudre CH Canas LS et al.Illness duration symptom profile symptomatic UK school-aged children tested for SARS-CoV-2.Lancet Adolesc Health. 2021; (published online Aug 3.)https://doi.org/10.1016/S2352-4642(21)00198-XSummary Full Text PDF PubMed Scopus (39) Google Scholar illustrates the potential challenges of what has been termed citizen science. Since 1995, a growing number research projects involving non-scientists have carried out under this heading.2Strasser BJ Baudry J Mahr D Sanchez G Tancoigne “Citizen science”? Rethinking science public participation.Sci Technol Stud. 2019; 32: 52-76Google In these projects, participants might variously perform scientific calculations on their home computer (ie, calculating), record biodiversity observations sensing), analyse images analysing), own laboratory experiments making), or share health-related information self-reporting). Increasingly, use quasi-ubiquity smartphone devices, offering possibility to drastically increase geographical scale size studies. Observational cohort studies typically include thousands (eg, Framingham Heart Study) exceptionally up hundred thousand Nurses' Study). But data collected within COVID Symptom Study application (app), which colleagues is based, was provided 4·6 million adults, present involves from 258 790 children. Beyond impressive numbers epidemiological research, it worth asking few crucial questions about how transform (or not) medical research. For advocates, claimed make more democratic inclusive) empower citizens, addition delivering educational promises.3Topol Digital medicine: empowering both patients clinicians.Lancet. 2016; 388: 740-741Summary (20) Scholar, 4Kaye Curren L Anderson N al.From partners: participant-centric initiatives biomedical research.Nat Rev Genet. 2012; 13: 371-376Crossref (200) Instead having enrolled clinical trials, attempts develop other models people are considered active partners process. As such, they could contribute knowledge an illness, ask that most relevant them as caregivers), determine acceptable ethical standards research.5Vayena Value health data: European opportunity catalyse progress digital health.Lancet. 397: 652-653Summary (3) Long before became fashionable term, social movements patient organisations demonstrated such promises were actually feasible medicine. example, 1970s, Women's Movement experimented with new ways performing self-examination collective sharing subjective experiences. Similarly, 1980s, organisations, AIDS Coalition Unleash Power (known ACT UP) USA Association Française contre les Myopathies France, directly involved defining priorities, elaborating protocols, evaluating outcomes. parents patients), uniquely able experiential eluded professional researchers.6Rabeharisoa V Callon M involvement patients' associations research.Int Soc Sci J. 2002; 54: 57-63Crossref (106) Although many current platforms rely similar rhetoric democracy individual empowerment, unclear if offer opportunities perspective than traditional study. mostly remains role passive participant, rather empowered participant. Yet, some cases, patients, born rare disease, substantially identifying through media analytics) same disease closely collaborating researchers.7Might Wilsey shifting model diagnostics: next-generation sequencing families altering way diseases discovered, studied, treated.Genet Med. 2014; 16: 736-737Summary (56) Critics emphasised conflicts interest among participants, eager advance describe political objective, recognition particular environmental problem, compromise integrity.8NatureRise scientist.Nature. 2015; 524: 265Crossref (55) response criticisms, three largest American, Australian, organizations (Citizen Science Association, Australian Citizen Association) acknowledged risk, but pointed fact problem no different science.9Newman Roetman P Vogel al.Citizen community responds Nature editorial.https://ecsa.citizen-science.net/2016/05/25/citizen-science-community-responds-to-nature-editorial/Date: May 25, 2016Date accessed: July 8, 2021Google Furthermore, strong commitment advocate transparency open access strongly mitigates risks.10Kosmala Wiggins A Swanson Simmons B Assessing quality science.Front Ecol Environ. 14: 551-560Crossref (292) can improve inclusion thanks popularity smartphones. enrolment apps surprisingly uneven; study1Molteni there over-representation higher-income households. Researchers correct sampling biases, others far difficult address. Those who app likely participate communities experiences advice, profoundly shaping sense especially non-specific symptoms fatigue (which prompted “I struggle get bed”). replacing conversation paediatrician health-care researcher questionnaire not without consequences. COVID-19 test result known will be better position control reporting biases anxious parent when child his her symptoms. Paediatrics, even specialties, long confronted patient's voice often mediated caregiver. It characteristic modern hospital medicine complex illness narrative replaced description signs symptoms, framed categories. nowadays, participatory once again freely feel, outside categories vocabularies. Such narratives now processed automatically analysing word frequency, paper, although refined methods relying artificial intelligence preserve singularity experience. Finally, all initiatives, important just researchers gained studies, experience whether matched expectations. Entering equivalent discussing worker answer further concerns factor underserved communities. end, emotive quality, those designing do. continue require close interaction turn unique into data. We declare competing interests. Illness SARS-CoV-2Although usually short low burden, prolonged duration. Reassuringly, burden did time, recovered day 56. Some negative SARS-CoV-2 also had persistent burdensome illness. holistic approach during pandemic appropriate. Full-Text Open Access