The Dignity Project has established a citizen science research framework to assist in communicating and guiding our research. This was adapted from the “Our Voice” Framework created by Stanford University.
Figure 1, above: Citizen science research framework, established by The Dignity Project
Citizen scientists are embedded within the research team in order to develop research aims, questions, vision and overall research design. Based on the cry of the disability rights movement, “nothing about us without us”, this framework supports research that is grounded in a community perspective to find solutions to problems that are needed by the community. Using the principles of co-design, citizen scientists are not consulted only at the start, but included throughout the data collection, analysis, and production of final outcomes.
Citizen science participatory research is conducted through accessible digital platforms and solutions to uncover problems, barriers, solutions, experiences, and information. The word ‘uncover’ is intentionally used as a reminder that the experiences being uncovered through data collection and the resulting outcomes are owned by the citizens. Data collection in this way is not about collecting or discovering something new, but using methods that are accessible and allow for the uncovering and exposure of issues and experiences that are inherent to the community.
Following data collection, citizen scientists, key stakeholders, researchers, and the members of the research team come together to analyse and discuss the data in order to develop inclusive outcomes and solutions. Whether through a steering committee, key informant interviews, focus groups, or a member checking process, the discussion of the data should include the greatest diversity of perspective and experience.
Co-designing and co-creating a new picture and understanding of concepts, theories, outcomes, and solutions as uncovered in the data and discussed with a diverse group of collaborators. The results should involve actionable, operational, and/or educational elements that can be used to drive change.
Research should be done in order to result in meaningful policy, practice, social, attitudinal, environmental and/or systemic change that ultimately leads to a more inclusive and accessible society. Research teams should pursue an empowering agenda that will result in actionable outcomes to produce change for the members of their citizen science community.