Exploring the Value of Health Data
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Through a literature review and stakeholder interviews, researchers found that health data could provide a variety of social and economic benefits to the health system, if societal and technical challenges to value capture are addressed.
The potential benefits range from quality gains for both healthcare delivery and health research and innovation, operational efficiencies and improved health systems planning and functioning. This is relevant for patients, health professionals and policymakers, the pharmaceutical industry, and the academic research community.
To harness these potential benefits, stakeholders will need to create better connected and collaborative health data environments; address technological and data quality issues; empower patients, the public, the research community and the healthcare workforce to engage with data, and respond to and shape regulation.
New types of diverse health data are presenting new opportunities for research and innovation, healthcare delivery and health systems. This is –in part- being enabled by rapid advances in internet-based technologies and data science, which are allowing new means of data collection, processing and analysis.
In this changing health data landscape, there is a need for researchers, industry, healthcare professionals, patients and the public, regulators, funders and policy-makers to consider a richer and broader array of evidence in decision making and develop a supportive health-data ecosystem. To better understand the potential for creating social and economic value from different types of health data, RAND Europe was commissioned by the European Federation of Pharmaceutical Industry Associations (EFPIA) to conduct a rapid evidence review of current insights on the topic.
The aims of the review were:
- Identify and explain the potential and existing benefits of the effective use of health data in a data-driven healthcare system. The research focused on examining value for research and development (R&D) and innovation, healthcare delivery, and for the functioning of healthcare systems more widely.
- Examine the required elements of a supportive health-data ecosystem and their implications for future research, policy and practice.
- A literature review to identify diverse types of health data, examine the potential benefits that access to and use of health data could enable, and explore evidence on associated challenges to value capture and efforts to address them.
- Key informant interviews to enrich findings from the literature review and to discuss critical areas for future consideration and action.
If social and technical challenges to value capture are addressed, health data could provide a variety of social and economic benefits to the health system. Some examples include:
- Prospects for new types of research and innovation associated with access to wider scale, more diverse and more stratified data;
- Achieving operational efficiencies in clinical trials due to more precise recruitment, retention and site-selection strategies;
- Enhancing research quality, for example greater external validity and confidence in results, enabled by access to critical mass of real world data;
- Improving pharmacovigilance (drug safety) through more complete drug safety profiles over time and more comprehensive assessments of possible adverse events;
- Enhanced, data enabled public health prevention and promotion as a result of more comprehensive data on risk factors, from a wide range of sources;
- Improved quality of healthcare (e.g. better diagnostic capabilities and more personalised clinical decision making) as a result of improved markers, screening algorithms and predicative analytics; and,
- Efficiency gains in care delivery through new prospects for data-enabled self-care and remote-care, when circumstances are appropriate.
These potential benefits are relevant for diverse stakeholders, and in a variety of ways. For example, health data access and use could:
- Empower patients to more actively engage with healthcare decision making;
- Assist health professionals and policymakers through providing better quality and more timely information to support their clinical and policy decisions;
- Enable researchers and academics to undertake new types of analysis and research; and
- Help the pharmaceutical industry better target their investments due to a more efficient and effective drug development process.
As part of efforts to build more supportive environments for health data generation and use, stakeholders will need to consider a number of key areas and issues that fall into five broad categories reflecting:
- Interdependencies, collaboration and coordination issues in value capture from health data;
- Public acceptability, awareness and engagement;
- Considering how to make the most of recent data protection advancements and data sharing models;
- Data quality and other technical considerations; and
- Workforce capacity-building to engage with health data.