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An exploration into current practices related to the reuse of health data by the European pharmaceutical industry found a number of important factors that can support or hinder the reuse of data. These include aspects such as the availability, interoperability and quality of data; data analytic skills and experience; and the presence of clear and uniform regulations.
Researchers identified a number of topics for further discussion that might help create a sustainable ecosystem in which health data are reused effectively. These included the need for continued research and development of analytic tools, promoting the adoption of standards and interoperability across datasets, building public confidence and trust in the pharmaceutical industry to reuse health data, and greater collaboration between industry and other key stakeholders.
The health data landscape is rapidly evolving, with a growing recognition of the potential benefits of reusing health data for secondary analysis by the pharmaceutical industry. At the same time, numerous technological, regulatory, economic and social challenges need to be addressed in order for stakeholders to capture value from health data, and support the creation of enabling health data ecosystems.
The European Federation of Pharmaceutical Industries and Associations (EFPIA) commissioned RAND Europe to undertake a study to explore current practices related to the reuse of health data by the European pharmaceutical industry. The reuse or secondary use of health data (by industry) refers to the use of data initially collected for some other primary purpose.
Specifically, the study aimed to develop an understanding of:
The study involved a mixed-methods approach, including: a targeted literature review; the development of 12 case vignettes exemplifying the reuse of health data by industry; a series of interviews with stakeholders across the health data ecosystem; and a synthesis workshop to reflect on the findings and articulate potential implications for future action by stakeholders.
These three are the most frequently mentioned types of health data being reused by the European pharmaceutical industry. Other types of health data being used include biobank data, prescribing and dispensing data, and claims data. More recently, social media data and data from wearable devices have also been used.
To enable better insights into the real world than an artificial setting allows.
To help increase efficiency and reduce costs for both industry and health systems.
A growing availability of health data is contributing to its increasing use.
The data is used for numerous purposes, such as:
The following seven suggestions might help create a sustainable ecosystem in which health data is reused effectively.
The pharmaceutical industry should actively continue to explore the reuse of new and different types of health data beyond those that have been traditionally used in secondary analysis.
As the field of health data grows, continued research and development is needed on analytical tools and techniques (including the ability to link different datasets).
A greater degree of collaboration between the pharmaceutical industry and other key stakeholders (such as regulators and healthcare system actors) is needed to improve accessibility to health data.
Promoting standards and interoperability across datasets could enable health data to be used effectively and efficiently as the health data ecosystem evolves.
There is a need for clearer and more uniform regulations (including for data protection) and guidelines related to secondary data analysis.
Improving data and analytical skills within the pharmaceutical industry is key to enabling effective secondary analyses of health data.
Building public confidence could help facilitate buy-in and trust and promote the further reuse of health data by the pharmaceutical industry.
