There is no international standard for data sharing
Despite the potential benefits of data sharing – and an apparent global commitment to the exchange and use of health data – it seems to face challenges in practice. There is no global, comprehensive structural framework or operational guidance on how to use and share health data.
Instead, there are many perceptions – and misperceptions – of existing laws. Lack of clarity regarding the application of data protection to various data-sharing arrangements creates both potential and real barriers in accessing, using and sharing public health data.
What are the barriers to data sharing?
Technical barriers may occur due to challenges with data collection or preservation, while there may also be language barriers as health data are almost always collected in the local language.
Motivational barriers are related to the personal or institutional motivations to share data. These may result from an absence of incentives to prioritise data sharing. Additionally, high opportunity costs (the cost of choosing one option over another and thus missing the potential benefit of the option not chosen) may limit the motivation and willingness to share data.
Economic barriers also create challenges in accessing, using and sharing health data. One example might be concern that potential health threats in a particular country – revealed through that country’s sharing of health data – could have a negative impact on tourism or trade. Lack of resources – either human or technical – can also create barriers. Political barriers, such as lack of trust between different stakeholders, could lead to barriers anticipated through concerns that data might be misused or misinterpreted. Meanwhile, restrictive policies also create challenges. Ethical barriers involve conflicts between the stakeholders’ values and moral principles.
What needs to change?
In practice, the exchange of health data relies on local, national and regional solutions. The need to share health data often arises as a response to a specific disease, which creates narrow policies and barriers.
Ideally, data sharing should be based on trust and transparency between all actors involved. This is built through dialogue and communication. To achieve a positive response, the values and benefits of data sharing must be clearly understood. Incentives should be created to increase willingness to share data.
Data sharing can be crucial in responding to health crises around the world. But for it to be effective, there must be some level of standardisation. Only by including all actors involved in the process is it possible to secure buy-in, build a legal framework and establish data governance agreements that support data exchange in health through political commitment and development. Standardised sharing, system development and useful tools to share health data will be fundamental.
Katarina Beyer is a former Associate Researcher for The Health Policy Partnership.
The opinions expressed in this blog are those of the author and do not necessarily represent the views of The Health Policy Partnership.