Step 1. Understand the purpose of sharing data, and with whom

There are multiple purposes for which data could be accessed, used and shared. Data sharing often helps to generate new benefits or insights that can't be achieved without combining or making use of multiple datasets.

Understanding the purpose for accessing, using and sharing data is a fundamental first step. Being clear about the purpose can inform the method by which data is acquired or shared.

In a healthcare project, the purpose could be, for example, to:

  • improve individual health outcomes by enabling personalised decision making

  • optimise health systems by identifying opportunities to allocate resources more efficiently

  • reduce unequal health burden by using data to inform resource allocation to those most in need or to tackle rare diseases

  • ensure equity in participation in health research

  • expand innovation, for example through use of machine learning.

Identifying the purpose of data sharing, and therefore the intended use, can help to identify key stakeholders that will use the data. Understanding who the potential audience is, and what value you want them to gain from using the data will help you decide what method you use to acquire or share data, and how restricted or unrestricted use of the data needs to be (the Data Spectrum).

Table 1 below describes some of the actors you might want or need to share data with, and describes some of the typical benefits each type of stakeholder would expect to generate from data sharing. The types of data that are shared will influence decisions on how to manage risks, and what sort of licensing agreement is most suitable to the data sharing partnership.

Table 1 - Actors and benefits of data sharing

ActorsThe value they expect from accessing shared data

Senior data leaders

Ability to view large, integrated datasets as essential tools for health research and for decision making.

Health system leader

Ability to ensure health data interoperability so it can be used in clinical decision making to deliver personalised healthcare.

Policy leaders

That the health sector will be transformed by the collection, integration and sharing of personal health data as some individuals have demonstrated an increasing interest in sharing and accessing their health data.

Health project partners

Recognise the importance of health data in accelerating the development of innovative medicines and technologies.

Government health bodies

View health data as a driver of improved healthcare delivery, reduced healthcare costs and innovation in the healthcare space.

Key actions to take:

  • Identify and record which data assets you want to share.

  • Define what you want to achieve by sharing the data: what is the purpose and intended use? What value/benefit do you hope to generate from sharing this data?

  • Describe who you think you will be sharing the data with or who you need data from, and how these actors will help you achieve your intended purpose (as outlined in the health data ecosystems play).

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