FREEDOM AND SAFETY
A recent news article in the Globe and Mail highlighted Canada’s data crisis and identified at least 28 critical gaps. These gaps intersect multiple sectors, ranging from health and education to environment, justice and Indigenous issues - a dearth that leaves researchers and policy makers in the dark. The article implicated governmental malaise for the inability to tackle this problem.
It is not surprising that governments at all three levels have been unable to foresee the existing data gaps and prepare for the digital age. Governments and government-funded entities, such as Statistics Canada, are not known for their speed and flexibility to adapt to emerging data needs.
It may be unwise to place the entire onus on government-mandated institutions, as slow-moving bureaucracy inherently places them at a disadvantage. Perhaps it is time to re-envision the paradigm of how data are collected, used and portrayed to the public. As a population health policy researcher, my expertise is in utilizing digital tools to engage citizens and communities to inform health policies.
If the ultimate goal of generating scientifically-sound evidence is to inform the public and policy makers to make well-informed decisions, we are not succeeding. This erosion of trust in scientific evidence has its roots in global upheaval of political systems.
The intersection of data gaps and lack of public trust in facts provides an opportunity for researchers to engage with citizens to source data that is driven by the people and for the people.
This is citizen science, and it has its roots in environmental and ecological activism. Citizen science provides a platform for people to collect and provide data outside of the rigid structures of government or industry-funded research. This scientific approach has taken new meaning in the 21st century, where Internet-connected devices such as smartphones are reshaping how we communicate.
Six billion devices
It is estimated that there will be six billion smartphones in circulation by the end of 2020. It is difficult to imagine our day-to-day lives without these gadgets. Out of all the Internet-connected devices we use, smartphones are the most versatile and pervasive tools. And so the question is: how can we transform smartphones into effective citizen-driven data collection tools to help tackle critical data gaps?
The answer lies in the integration of citizen science and community-based participatory research, which involves the equitable inclusion of communities throughout the research process. In order to translate citizen science into community voices that could inform and influence policies, it is imperative that community-based participatory research principles are applied. Citizens co-design studies and co-create knowledge with researchers by contributing to all aspects of the research process.
Community-based participatory research has the ability to address health inequities by building capacity and integrating knowledge translation. Citizen science can use the structure of community-based participatory research to take local approaches of problem solving to a global scale.
However, to truly integrate citizen science and community-based participatory research, we must realize the power of one tool that almost everyone has, and connects us all: the smartphone. Moreover, if citizens drive data collection, then decision-makers will probably pay more attention, because citizen scientists are in essence, voters.
It is time for all of us as citizens to realize that in the age of social media, there is a need to re-imagine our approach to data. Market dynamics dictate that we take advantage of the ubiquity of smartphones and perhaps put it to some concrete use.
There are emerging citizen science platforms such as SMART, which are exploring ways to address data gaps by engaging citizens aged 13 years and above, via their smartphones for population health surveillance, integrated knowledge translation, and policy interventions. The SMART Platform is being used to run studies with various designs (from cross-sectional and longitudinal to quasi-experimental and community trials) to understand how smartphones can be used to innovate citizen science by engaging with citizens in real-time. The ability to respond quickly to changing data needs enabled SMART Platform to capture citizen scientist perspectives on issues such as marijuana consumption, before, during and after legalization.
Still, researchers have not even scratched the surface when it comes to integrating citizen science and community-based participatory research in addressing data gaps. They are not enabled to do this as the existing structures of research do not reward innovation adequately. For this integration to materialize, it is necessary to leverage citizen-owned communication devices that have revolutionized our ability to sense, share and link big data. This can be alarming because of technology companies’ poor ethical records. Thus, it is imperative to transfer the power back to the people by involving them in data collection to not only gain critical trust, but also to kickstart a proactive discussion about data privacy and confidentiality.
Data privacy and confidentiality are obvious hurdles in advancing this science. But if the response rate of the 2016 long-form Canadian census is any indication - 68.3 per cent of respondents completed the census over the Internet - we can assume that citizens are willing to play a part in addressing Canada’s data gaps using technology.