Creating a Data Culture for Health Justice
INTRODUCTION
Data does not operate in a vacuum as every part of the process is coloured by top down factors such as culture. Which data is collected, how it is analysed and the insights drawn from data are all decision points practitioners have to make and all practitioners belong to a specific culture which influences them. It is important we recognise this phenomenon and no longer operate on the assumption that data is not dictated by top down factors.
This is crucial as data studies could unintentionally contribute to health injustice, certainly this has been an observation at Centric. We have witnessed several cases where communities are told data does not support their claims of poor health. For example, in Southall, they were told their children’s increased poor health was not linked to the former gasworks’ site being redeveloped in their neighbourhood as a data study on absenteeism showed no correlation between sick days and the start of the site. However, many children in this community have to go to school regardless of illness due to parents working zero hour contracts, essential work, or shift work.
Therefore, if a practitioner is not aware of this cultural difference they could omit it from their data collection strategy, as was the case for Southall. This could result in generating an insight that is not only inaccurate but works against the best interest of the community.
This framework is about avoiding future scenarios of health injustice and instead setting a culture of justice.
“Data security and the ability to trust the source or avenue for data collection are crucial for health knowledge development. Decentralised platforms and non-commercial institutions can play a vital role in helping communities safely aggregate their experiences.”
Take due diligence to establish the phenomena before deciding what data to collect and analyse
The data is only as useful as its relevance to the question it is trying to answer. The community will be the ones experiencing the phenomena and therefore more intimately tied. Taking time to co-discover the problem, incorporating the data collected by the community, and discussing the lived experience with the community in depth to create context for further data gathering. This context will help the practitioner identify which data to collect, methods, and tools.
Setting up an initial exploratory research on how people talk about air pollution, how they prioritise clean air and the data they have collected. Use this research to co-create the thesis (question/problem) and understand what further data is needed to answer or address the question.
Communities have the capacity to practice scientific methodology
People already have a vested and instinctual interest in observing their surroundings, specifically changes that could affect their safety or health. After observation comes creating a hypothesis or a reason why these changes are happening, often this is followed by data gathering and a conclusion. It is important not to make the assumption that a community does not have their own data, observations or insights already.
A community may already have a Whatsapp group where people time-stamped and described their experiences. Many may also have a form of diary they are using for cataloguing the changes in their environment. These data points are being used as insights for enacting justice. By the time a community is asking for change - they have already gone through a lot of research, which can be used by those in charge.
Knowledge management should be bespoke to a community
Health is place dependent, therefore it can vary vastly from community to community. It can also vary within the community. Therefore, the knowledge that may be suitable for one household or individual may not reflect in the wider community or across various communities. So there must be an accessible way for people to make decisions and gain knowledge with this understanding in mind.
A community member is able to understand trends in air pollution but also may need bespoke to make decisions that are specific to them. For example, what are the weather conditions that can reduce air pollution or what are the peaks in traffic in their area. They are able to create this knowledge through an open database by local authorities or a local university.
It is not the job of practitioners to decide the cultural framing of health, it is a conversation to develop with communities
The terminology and framing used by practitioners are useful for developing a scholarly understanding of health and health phenomena, but every community will have its own cultural framing based on practises that may be internally developed or adapted from other environments.
Affected community members get to give honest feedback through interviews, surveys, or interventions on how interpretable the data is for their health knowledge.
Use data with communities, not at them whenever possible
Some data on infrastructure will be characteristically macro and presented to people who would have no way of reaching the same insights as individuals. If communities have no agency and understanding over the data used to make decisions about their health, they are likely not the ones involved in making those decisions nor do they have an avenue to genuinely critique the process or impact of data-driven health decisions.
Setting up shared spaces to share the insights and allow community ideation such as on open-access database.
Data isn’t just what is collected but also what is disseminated
Data is meant to support decisions and answer questions. The narrative involved in disseminating information and the accessibility ultimately determine the impact outside of academia and research.
Facilitate the ability for communities to accurately understand the current information on the urban heat island effect. Work with them to determine behavioural implications such as what temperature or heat island effect level reduces the safety of being outside for longer exercise.
People should have instruction on self-reporting strategies as well as the ability to develop their own
There is no one way of collecting data that will cover every demographic, so people need to feel empowered to develop their own data practises that can then be fed to a wider network.
Communities should have a trusted repository for aggregating their experiences
Data security and the ability to trust the source or avenue for data collection are crucial for health knowledge development. Decentralised platforms and non-commercial institutions can play a vital role in helping communities safely aggregate their experiences.
Stakeholders and practitioners will be in place to accommodate community members in a variety of collection methods
With the agency given to communities, practitioners play the role of consultants who fine-tune the way communities develop these resources and processes.
Stakeholders will be referred to when updated knowledge is made about the health of a community
Stakeholders (such as academic institutions, local authorities, health institutions) contribute to domains where they have more access and expertise.
Grants that include the community or go directly to the community are important to community health sovereignty
To get funding for a data study you have to be an academic institution or an established NGO. This can truncate the self determination of communities who need to create their own health justice or solutions.
Until the grant system moves towards health justice, practitioners can create a bridge by including the community in their grant budgets or co-apply for a grant.
It is important that practitioners fit the culture of the community rather than force the community to adjust to them. As this can reduce the mental burden for the community. Furthermore, every practitioner that takes an interest in a community is a cost to the community - which often need to explain the problem from scratch, this is time costly for community organisers
Take time to do self study
Pay the community for their time
Do pro-bono for the community at the scale that is best suited to them. Rather than “giving” them something they do not need, which is also a burden.
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