Open Life Data Framework
Launched on 18th November
With a keynote address by George Freeman MP, Parliamentary Under Secretary of State and Minister for Science, Research and Innovation, this event held during Longevity Week presented an update on the levelling up health programme of the APPG for Longevity, outlined Business for Health’s plans to develop a Business Framework and Index and bring Health into ESG mandates, and launched the APPG’s Open Life Data Framework to drive innovation in healthy longevity, while offering an international perspective on multistakeholder collaboration in health for global prosperity.
‘Open Banking’ moves to health with ‘Open Life’ to address public concerns over commercial use of personal health-relevant data. The consent-based trustworthy framework, first introduced in The Lancet, was developed with contributions from over 100 experts and organisations including Health Foundation, NHSX, Centre for Data Ethics and Innovation, Ada Lovelace Institute, National Data Guardian, Office for Health Improvement and Disparities and the CBI. Its goal is to create the enabling conditions for public and private sector actors to share data for public benefit while unlocking innovation to increase healthy life expectancy by 5 years while minimising health inequalities (‘HLE+5’).
Click here for the report launched on 18th November, with George Freeman MP, Science, Research and Innovation Minister contributing the foreword and speaking at the launch.
The Open Life Data Framework was a recommendation in The Health of the Nation. Its rationale was published in the Lancet, Open Life Data to Support Healthy Longevity for All, on the same day the APPG published Levelling Up Health on 9 April 2021.
The specific goals are to:
explore how better use of data and data-enabled technologies could make a positive contribution to the health, wellbeing and life chances of all people equitably.
propose solutions for innovating, scaling-up and leveraging these technologies across the private, public and academic sectors.
ensure that digital health infrastructure and innovation support is fairly distributed and resilient, reducing inequalities in co-creation, access and outcomes.
build public trust in the use of data for individual and collective health and social care purposes.
The APPG formed an expert group to define what is needed to establish an open health system, drawing from other models like our Open Banking system and standards to harness data-intensive technologies to extend - and make more equal - the healthy longevity of British citizens across their life course.
Two task meetings took place in November 2020 which informed our responses (see here) submitted to the National Data Strategy consultation that closed on 9 December 2020.
Three working group meetings have taken place in 2021 to inform a wider consultation taking place in September 2021 to build on the NHS Data Saves Lives Data Strategy published in July.
The Open Life Data Framework is open for consultation from 1st September 2021.The announcement can be read here
The Open Life Data working group, comprising 45 experts (see the list here), is chaired by Lord James O’Shaughnessy, former Undersecretary of Health and visiting professor at Imperial College. The report was informed by over 100 contributors and authored by Gavin Starks, CEO of Dgen, and co-architect of the Open Banking standard and Tina Woods, APPG Director and co-author of the Health of the Nation Strategy and Levelling Up Health.
The Open Life Data Framework is supported with funding from the Health Foundation, an independent charity committed to bringing about better health and health care for people in the UK. Their aim is a healthier population, supported by high-quality health care that can be equitably accessed.