CCRP Data Missions
Towards truly multi-modal patient data
Patient-centred data is generated at many different stages of a patient’s journey, including routine healthcare, recruitment into trials, and from more basic research projects looking to link experimental observations to outcomes.
Our patients increasingly expect us to use their data to improve both their experience and that of other patients in receiving treatment. Therefore, accessing and using patient-centred data is a core requirement for all the Cardiff Cancer Research Partnership activity to deliver world-class cancer research, enable scientists to bring new discoveries into the clinic by strengthening the translational pipeline and increase patient participation in novel research.
The CCRP partnership will enable us to find new and more efficient ways of working with these diverse types of data (multi-modal), which are stored in various locations and governed by differing ethics, governance frameworks, and data controllers. By collaborating more closely and working to bridge the operational barriers between organisations CCRP is plotting a path to ensure the maximal use of healthcare data for the clear benefit of patients and to enable future research opportunities.
From visions to missions
CCRP has defined three aims for the data focused activities it needs to deliver to deliver the outcomes patients expect from us.
Firstly, we need to “Go Further” than we can now, by increasing the knowledge of the diverse data that are generated during healthcare and research and can be assembled into a valuable patient centric multi-modal dataset. We need to make better use of the available data for both service improvement, trials recruitment and to underpin the research which will lead to the treatment of tomorrow. We also need to improve the quality of data to enable us to work across borders and join national and international trials and research studies.
Secondly, we need to “Go Faster”. Researchers and clinical teams need more information about their data and the ethics and governance processes required to use it creatively to speed up the adoption of new trials or enable novel research.
Finally, we need to “Go Together”. The CCRP partnership enables us to streamline processes and work collaboratively with an increased understanding and trust between organisations. This is the key to our progress on the first two aims.
The work to deliver each of these aims is defined by a series of “data missions” each with their own work programme to increase our collective:
- Data Knowledge
- Data Use
- Data Quality
- Data Training
- Data Information
- Data Community
- Outward Engagement
CCRP Data Community
Making Maximal Use of Cancer Data
Data Case Studies
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