Impacts from use of healthcare data

When considering risk, it is important to assess any possible broader harmful impacts as well as legal risks, for example impact on individuals, sections of society or whole nations. Data ethics are especially relevant when data activities have the potential to directly or indirectly impact people and society.

For example, population-wide data is often used to allocate health resources, but this can entrench and widen health inequalities. At the start of the COVID-19 pandemic across the United States, population-wide data showed surging rates of infection, but testing facilities and other healthcare supports were not located in the African-American and Latinx communities where the majority of infections were occurring. In Europe, the lack of data on migrant healthcare access and outcomes hides the disproportionate health burden faced by these populations. When data is used at a population-wide level to plan healthcare and allocate resources, it can indirectly impact on those facing the greatest health burden.

When considering broader impacts, think about the people the data is about, people or communities impacted by its use, and organisations using the data. For example, could this data create bias in decisions drawn from it?

The ODI's theory of change, which outlines how impact is created from data

In healthcare projects, examples of potentially harmful impacts through unethical collection, use or sharing of data include:

• denial of access to healthcare, or higher treatment costs, for subsets of the population

• discrimination against patients with certain medical conditions or characteristics

• prioritisation of healthcare solutions for subsets of the population.

Understanding the potential risks involved when collecting, using or sharing personal data also helps identify what mechanisms can be put in place to mitigate those risks and potential harms. Tools such as the Data Ethics Canvas can help you to identify potential harmful or positive impacts. The appendix to this play includes examples of potentially harmful impacts that could occur to people, organisations and society, and sets out potential mitigating actions.

Key questions to ask:

• What are you trying to achieve by collecting, using or sharing data?

• What harmful or positive impacts might there be from this?

• How will you minimise potentially harmful impacts?