Citizen Science 2019: Citizen Social Science for Environmental Public Health Research

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There are specific challenges for citizen social science – e.g. personal information, ethics Lisa Lundgren (NCSU) and Steve Prince (EPA).

DSCN3306Steve Prince – behavioural economist, and covering the SmokeSense app. Smoke Sense is about wildfire Smoke exposure. The problem that is addressing is thick smoke that blanket an area – different people might react differently to the issue. There is an increase in mortality but also impact across the population with more people impacts at the bottom of the pyramids. So they wanted to understand the behaviour and the impact of people – from a runny nose to asthma. They wanted to understand how people react and therefore to think about heuristics and biases to decide what to do. People use information that is available, and the EPA want to understand how people understand this information. Want to have Smoke Sense so it gives the feedback in the hand of many people – a smartphone app for people who are interested in smoke pollution and health, and want to contribute and understand the health impacts. They wanted an iterative impact – download and use it once is not helpful, and the repeated use is helping. The interface explains to people the air quality index and what it means. The EPA tries to link numerical levels to information. People are interested in things next to them, but also give the indication across the USA. But by showing a map it is possible to visualise that the impact of west coast smoke is going nationwide. Users need to interact with their health but also share this information with the EPA – DSCN3307from scratchy throat to Wheezing. They are looking at Symptom Mitigating Behaviour and Exposure Reducing Behaviours (ERB) – e.g. leaving the area, or using a mask. There is in the app information about other people – providing a weekly summary of the symptoms. They are trying to consider personalised messages vs. more generic messages – they are also considering what are the nudge-able moment for people in terms of behaviour change, so they are asking the users to provide information about estimating what other people do, and do you think that other people are supposed to do it – e.g. changing the circulation of air in the car when passing smoke. Smoke Sense got motivated participants – high education participants and not representative of the whole population. In terms of the health profile, they try to understand the context. Also, want to consider if it is a serious concern. What tools are available to reduce smoke exposure? what happens when smoke hits? The circular goal is for users to leverage the tool and use it in their community.

DSCN3308Lisa Lundgren – Sound Around Town (by Caren Cooper). When we listen to different sound set the mood of people even before we process sight. There are questions – what kinds of noise exist in the US? What sounds people here? So Sound around Town is about using sound in environmental justice – the noise paradox: noise that is annoying: machines, aeroplanes can be below the thresholds. The request of the project is to have listening sessions, while accurate listening devices collect objective measurement. The project meld citizen science and social science. Sound is subjective – the perception of sound is personal. There are ethical issues – the devices might pick up a conversation, also who should consent to the participation. The ethics require third-party consent in terms of the volunteers. There is a new classification of the privacy issues in citizen science projects according to the type of issues with participants in the Cooper et al. paper in the new issue of Citizen Science Theory and Practice. Project collect Private information and we have to consider the impacts. There are questions about how IRB should proceed and who should deal with the oversight.

Liam O’Fallon – NIEHS – like the link between citizen science and environmental justice. Looking at citizen science from environmental health and justice. Looking at such issues across the country. It is one approach in the wider context of community engagement in EJ. In this type of partnerships, people bring something unique in terms of skills and knowledge. There are different levels of engagement in terms of community ability. Motivation is important – how we motivate people? They have lived experience, and they want to understand the questions of how things impact their health. How they can collect data and visualise the evidence about the impact. In citizen science, there is a potential for developing equitable relationships with communities. The grant part on NIEHS is providing funding to enable communities to participate in health issues: citizen science is part of education and learning about soil, air quality etc. Community groups manage to achieve change in their area and inform decision-making practices. There is a community air monitoring network in California that impacts the operation and lots of other communities. Work in Rutgers helped communities in understanding the impact of track routes. There is also local histories and knowledge – the role of anthropology and the challenge of data collection. Collecting local knowledge require special skills and ask who own this. Also how it is used. We need to think about the purpose and what is the goal. Social Science issues are an important area in environmental health.

Rebecca Jordan (MSU) asking questions about citizen science from an academic perspective. When people are engaged, there is an authenticity to the data that is not there is other forms of engagement with science – there is gathering information that will have consequences. Something happens with this information and that really matter. Adding a layer of collecting data with people, and we have an interplay between human and natural systems. The data about humans – there are questions about who is the scientists in citizen social science with the participants analysing the information. We can be gathering social data from humans – e.g. Likert scales. We now have people that play a role in the data that was collected around them. There are parallels with Facebook social experiments that raise issues about trust and the consent to dealing with the data. We need to help society and human psychology – we conflate what we think is happening and what they observe and we need to pay attention to it. We need to deal with consent, and it relates to the ownership of information.

Bethany Cutts (NCSU) there is confusion between citizen science and community-based participatory research, not only because in participatory research there are differences in perceptions of citizen science. In EJ, there is a clear use of citizen science but their scientific results were dismissed regularly and we need to consider the societal changes that are required to achieve the change. We need to think about knowledge extraction and traumatisation – it can inflict a new trauma on participants. Anthropology and other social science dealt with that for a long time. We need to think about collecting data about people and the collection social data – e.g. in Sound around Town to pay attention to notice the individual experience and disregarding the experiences. We see move away from regression to describe the wider range of experiences. She’s doing a storytelling project but it included recording e-coli in the soil was an important element to move people beyond traumatisation,

Mary Clare Hano (EPA) social scientists at the EPA and there are very few social scientists at EPA. Asking the question about citizen social science is significant. Coming from action-oriented and leadership work, and had to make sense of citizen science and how it differs from CBPR. There is a wider range of views with people bringing different views. So consider what are the impacts of citizen science and how it can influence organisational change. There are other research projects that ask questions about how we motivate organisations to get involved in citizen science projects? Will they have a bigger impact and change?

DSC_1516.JPGAl Richmond (Community Campus Partnership for Health) based in NC and – ccphealth.org – looked at 5 distinct communities and checked the process of engagement and protection of individuals. However, we have minimal assurances for individuals but not for communities. In the communities that they looked at, they have seen how community organised themselves in a community review process – for the very early stages of the project to the final part of the project. They are not competing with IRBs but how the community is being described in the publications about the project. Do we describe communities as distress or as the soundscape of the community? How do we tell the story of communities that won’t re-traumatise the community? Think about how a specific place is associated with historical issues.

Digital divide issues of using apps and smartphones – actually a need to engage with the researchers in a way that take into account the limitations and characteristics of the people that you work with.

Need to think about activism – trying to lead a change, and how we create jobs and change ecosystems within communities. There is burnout from communities that are being researched and explore – academic institutions are thinking in silos. If you do research in eastern North Carolina, map who is there, work with them and collaborate with them

 

 

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mukih

Professor of GIScience, University College London

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