Table 1
Examples of barriers (concrete and perceived or structural) facing citizen science work in biomedicine and healthcare.
| Skills and tools | May need to learn new skills |
| May not have access ($) to software or analysis tools | |
| Data | Data may not exist (yet) and may need collecting |
| Must figure out where and how to store data, including updates/new data submissions | |
| Data storage may involve cost ($) | |
| Data storage may involve learning new technology | |
| Preparing for dissemination or publication | Requires written communication skills, sometimes in languages that are not the primary language |
| It takes time and effort to write up results for dissemination | |
| Traditional publication submission process costs time and is burdensome; in some cases it costs money ($) | |
| Perceptions (not concrete barriers but may still structurally appear to be concrete) | Conferences or publications may cite a “requirement” of an IRB or ethical review board that is not a hard requirement and/or is not required for the type of research performed (e.g., retrospective, anonymized data analysis on community-donated data) |
| Conferences or publications are designed for credentialed submitters from institutions; submission may involve copious use of “n/a – not applicable” in credential or degree fields; institution; location; and other fields. In some cases, systems are designed to auto-reject or return submissions if they do not have a validated institution (e.g., many journal publication systems use Ringgold to validate institutions) |
Table 2
Examples of barriers to disseminating citizen science knowledge in biomedicine and healthcare in traditional journal publications and conferences.
| Time | It takes time to prepare a publication for submission, and if rejected, resubmission requires significant formatting changes even if the content of the manuscript stays the same |
| Money | There are often article publishing charges (APCs) or open access (OA) charges for journals |
| Gatekeeping | Priority about what is important is determined by those the system is designed for—traditional researchers and, in the case of biomedicine and healthcare, clinicians. There may be a disconnect between the research priorities of citizen science researchers and those of traditional researchers |
| There may be too big of a gap between what is being done or has been done, and the current work—or so perceived by the gatekeepers of publications if the current work submitted is not clearly linked to existing literature | |
| Perceptions | While pre-prints are sometimes allowed (but sometimes not), some journal editors are biased toward research that is available in a pre-print server |
| Citizen science publications may face concerns and biases around self-reported or -collected data, even when there is no other data source established | |
| Reviewers may recommend rejection of an article and suggest instead it appear on a patient website rather than in a journal, based on conscious biases around what should appear in a journal. Similarly, lack of credentials and institution may influence both editor and reviewer behavior. |
Table 3
Successful examples leveraging strategies to overcome barriers in biomedicine and healthcare-related citizen science.
| EXAMPLE STRATEGY | EXAMPLE PROJECT, TOPIC, ETC. | WHY THIS MIGHT BE EFFECTIVE |
|---|---|---|
| Have or leverage an established organization as an umbrella for citizen science projects | PatientsLikeMe | Organizational resources to address access and structural barriers, as well as additional skilled collaborators to contribute |
| Work on a well-known disease or topic | Nightscout, OpenAPS (open-source automated insulin delivery), and other diabetes-related projects | Easier to tie to existing work and describe the change from the status quo More collaborators among traditional researchers who understand the problems or gaps |
| Take advantage of timely media attention | Long COVID | Mainstream media attention also raises awareness among researchers and editors who may be less likely to gatekeep in journals as a result This may also make it easier to find interested collaborators among traditional researchers |