Our vision is that every health and care interaction and research endeavour will be enhanced by access to large scale data and advanced analytics.This will only be possible if patients, the public and health and care professionals have both transparency and confidence in how their personal data is being used.
We believe that “everyone should be represented” and that everyone should benefit from scientific discoveries. While patients must have the right and ability to opt-out, we hope that the period of engagement announced this week will minimise the number of people that choose to exercise that right, and those that have opted out feel sufficiently re-assured to opt back in so that their data can help new scientific discoveries that benefit the whole population.
We will continue to work with our public representatives, research community and data custodians to create a trustworthy ecosystem for the access and use of health data, including:
- Building trust in data access through public involvement in governance – following through on the recommendations from the 51 Public Advisory Board (PAB) and the response of the
- The principles and requirements ofTrusted Research Environments (TREs),to ensure privacy is protected whilst enabling large scale research(we will shortly publish a White Paper for consultationon this)
- Transparency of data use through standards and open publication of Data Use Registers by Alliance members and other data custodians; afor which has recently been published for feedback.
Through the wealth of expertise across our community, we will continue to support partner organisations across the sector to unite the UK’s health data, ensuring patients and the public are fully involved in how their data is being used, to improve their health and care.
Read the recommendations from PAB
