In 2020, Roche has joined our Commercial partnership programme to improve the way data is governed in data-driven healthcare projects to create better outcomes for patients.
Roche joined existing ODI Commercial Partners Arup, BBC, Microsoft, Refinitiv and Sopra Steria: a peer group of organisations who share a common vision of a collaborative, open and trustworthy future.
Why is data in healthcare important?
Data is the lifeblood of the healthcare system. It has the enormous potential to address societal and economic health challenges like the early detection, screening and monitoring of non-communicable diseases, like Parkinson’s. The outbreak of the coronavirus (Covid-19) has amplified and accelerated the need for an open, trustworthy data ecosystem that benefits everyone’s health.
We are at a pivotal moment in history. A convergence of medical knowledge, technology and data science is set to revolutionise patient care. However the move to more personalised healthcare requires access to, and use of, health data at each stage of the patient journey.
The challenge in access, use and sharing of health data
The impact of recent developments in data and technology on our health, and health and care services is still uncertain. We know from our recent research that patients, projects and organisations stewarding health data can find it hard to see the benefits of data sharing, that trust across the data ecosystem is weak and the willingness to share data as a result of this is low.
To address these challenges, projects and organisations innovating with health data need support to demonstrate they are accessing, using and sharing data in trustworthy ways, while minimising harm to the individuals or communities the data is about.
Throughout 2021, we are working in collaboration with Roche to:
- identify and engage a range of data driven healthcare projects to understand challenges and knowledge gaps in accessing, using and sharing data in this context
- create a set of materials to support healthcare projects in accessing, using and sharing data in responsible, ethical and equitable ways that reduce risks to decisions, outputs and patients
- demonstrate to patients and partners how hands-on leadership in data governance can deliver better outcomes in healthcare and support those working in the sector.
Together with Roche we will design a ‘Data governance playbook for data driven healthcare projects’. The playbook will be a resource for Roche – and its customers and partners – to use and share globally.
We will share updates on our work as the project progresses, and if you have questions or ideas regarding data governance in the healthcare sector, or would like to discuss it further then please email us.