Maintaining public trust is essential to fully realise the potential of health and care data for research

Today, we publish our joint report with Health Data Research UK and the Collaboration for Advancement of Sustainable Medical Innovation (CASMI) on Realising patient and NHS benefits from health and care data – From policy to practice, which summarises the discussions at our workshop held on 22 January 2020.

The UK NHS is uniquely positioned to become a world leader in the use of electronic health records and innovative health data science for public and patient benefit. This has enormous potential to improve patient and population health and care, inform the development of new medical innovations, make the NHS more efficient, and contribute economic benefits through fostering life science industries. However, there is a risk that this potential may not be realised if public concerns around the use of patient data, including by commercial partners, are not fully addressed.

This workshop brought together stakeholders from the NHS, academia, industry, charities, learned societies, patient groups, clinicians and policymakers to explore how external access to health and care data sets might work in practice. The aims were to share best practice and perspectives, reflect on experience to date and get broad views and perspectives on the emerging governance, commercial frameworks, and priorities for the wider sector.

Key themes to emerge from the workshop included:

  • Public support and partnership in using data about patients for research is needed to fully realise its potential. This will require ongoing dialogue, engagement and the co-production of research and decision making with the public, patients and healthcare professionals in a way that ensures agency and respect.
  • The use of health and care data about patients for direct patient care and for research is generally well accepted and supported by the public. In addition, the body of evidence on the public views of commercial access to health data continues to be strengthened, with new insights emerging from deliberative public dialogues, including those commissioned by Understanding Patient Data and NHS England, and the OneLondon Local Health and Care Record Exemplar.
  • Practical interpretations of the recent and emerging policies and principles intended to guide the use of health data for research are needed so that all involved know what to do (and what not to do), how to do it, and why and how decisions are made. Public scrutiny, transparency and accountability regarding what happens in practice is critical to ensure practice is in line with agreed principles, and to enable policies and principles to evolve over time if/as unanticipated issues emerge.

The outcomes of the workshop will directly inform work by Health Data Research UK and the Health Data Research Hubs, which are looking to generate research-ready data sets and make them accessible to research. In particular, feedback from the meeting on a proposed commercial framework will be used to inform the Hubs’ future business models. This will be done with engagement and involvement of members of the public, patients and practitioners, and through involving lay representatives in their decision-making.

The full report from the workshop is now available to view and download on the right hand side of this page. To find out more about the Academy’s work on health data policy, please visit our dedicated microsite.

 

 

 

 

 

 

 

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