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Rebecca Simmons: Using citizen science to boost healthcare improvement research

No one understands the NHS better than those who use it and those who work in it. So research on how to improve healthcare must be informed by the expertise of patients and staff. At THIS Institute, we are using crowdsourcing and citizen science to connect with these groups, asking for their time to help produce evidence that is both highly relevant and scientifically important. Citizen science can help produce high-quality research and promote dialogue between researchers and the public [1-3].

Crowdsourcing engages a large pool of people who individually make small contributions. These can add up to big efforts [2]. This approach can be used in citizen science research projects, where “citizens”—usually members of the public—provide inputs and valuable contributions despite not being formally trained experts in the topic of study [4]. By drawing on the collective intelligence of many individuals, crowdsourced projects can benefit those who run research projects as well as those who participate in them.  

The most obvious advantage of crowdsourcing is the ability to collect or analyse data on a much greater scale [1]. A large crowd has the capacity to complete research tasks more efficiently than a small team of researchers. Crowdsourcing can also generate new ideas for research questions and ways to solve problems by drawing on a wider range of perspectives [3]. These benefits have been seen in citizen science projects across a range of disciplines, including astronomy, ecology, history, medicine and political science. For example, Cancer Research UK developed a project called Cell Slider, in which participants analysed images of breast tissue samples by categorising cells as cancerous or non-cancerous, and estimated levels of oestrogen receptor present in the cells [1,5]. Nearly 100,000 citizen scientists participated in the project, analysing 180,000 images and providing accurate oestrogen receptor data [5].

By bringing non-researchers into the scientific process, citizen science’s impact goes beyond individual research projects. It allows researchers to interact with the wider community, which can help to promote scientific understanding and literacy, and enhance public trust in science [6]. It can also help researchers better understand the perspectives of patients and the public and ensure their perspectives guide policy and research decisions [7].

Researchers interested in incorporating crowdsourcing can make use of a range of online platforms and tools, including the Zooniverse [8]. There are also dedicated platforms that engage online crowds to perform systematic reviews of research articles, including Cochrane Crowd [9] and Mark2Cure [10]. Evaluations of Cochrane Crowd projects have shown that the crowd performs very accurately, meaning ‘non-traditional’ reviewers can provide valuable contributions to the systematic review process [2]. The crowd’s sensitivity (true positive rate) and specificity (true negative rate) were both more than 99% compared to the performance of a systematic reviewer and information specialist [11].

Though citizen science has many benefits, there are also challenges to consider when involving a large and diverse group of participants in research projects [1]. To maintain data quality and scientific rigour, researchers can provide participants with training and supervision, well-defined tasks, and feedback. Researchers should also consider how to motivate, retain, and reward participants throughout the project, since keeping participants engaged is critical to the project’s success.

Standard principles and policies regarding research ethics and scientific integrity generally apply to citizen science projects. However, using disparate crowds to conduct research raises some specific ethical and legal issues. In particular, researchers should carefully consider data ownership and intellectual property issues. The European Citizen Science Association (ECSA) provides a useful summary of good practice in citizen science, recommending that citizen science programmes be evaluated to assess data quality, patient experience, scientific output, and wider societal or policy impact [12].

Crowdsourcing and citizen science have a huge potential to boost healthcare improvement research. At THIS Institute, these approaches will help NHS staff and patients play an essential role in building the evidence base to improve healthcare quality and safety. As our citizen science projects move forward, we will share our learning on how to best engage NHS staff and patients to help citizen science and crowdsourcing reach their potential.

Rebecca Simmons is deputy director at The Healthcare Improvement Studies (THIS) Institute, where she provides strategic leadership for the Institute’s work to strengthen the evidence base for improving healthcare.

Competing interests: None declared.

Acknowledgements:

This article is a summary of three reports related to crowdsourcing and citizen science published by The Healthcare Improvement Studies (THIS) Institute in 2018. These reports are based on research conducted by RAND Europe. We would like to acknowledge the authors of these reports: Catherine Lichten, Rebecca Ioppolo, Camille D’Angelo, Molly Morgan Jones, Lucy Strang, Sarah Parks and Salil Gunashekar (all RAND Europe).

References:

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