Patients, researchers and clinicians will work together to explore the safe and ethical use of health data for research into specific diseases including cancer, Crohn’s disease and asthma.
Patients and the public will be involved in decisions about how their data is used and accessed to ensure the benefits are returned to the NHS and the wider UK community. Existing rules for accessing data safely and securely will continue to apply.
The Health Data Research Hubs are part of a four-year £37million investment from the UK Government Industrial Strategy Challenge Fund (ISCF) announced in November 2017 led by UK Research and Innovation, to create a UK-wide system for the safe and responsible use of health-related data on a large scale. The hubs will also stimulate further economic growth through greater research activity.
The seven hubs are:
- A cancer hub that aims to transform how cancer data from across the UK can be used to improve patient care, diagnose the disease earlier, and enable people to access innovative new medicines, potentially contributing to saving the lives of 30,000 cancer patients a year
- An eye health hub that will use data and advanced analytics, including artificial intelligence, to develop new insights in eye disease and how this applies to wider health such as dementia and diabetes
- An inflammatory bowel disease hub that will use data to address the urgent need to better understand why patients with Crohn’s Disease and Ulcerative Colitis respond differently to treatments
- An acute care hub that will use data from community health, the ambulance service and hospitals to enable innovative healthcare companies to develop, test and deliver advances in clinical care
- A clinical trials hub to increase opportunities for patients to participate in clinical trials
- A respiratory hub that aims to improve the lives of people with respiratory conditions, such as asthma and chronic obstructive pulmonary disease (COPD)
- A hub that aims to use real-world data to improve understanding of many long-term conditions, starting with Type 2 Diabetes, finding new life-saving treatments by using advanced technologies and artificial intelligence, and even preventing them altogether
Amanda White, head of communications and engagement at Health Data Research UK, answered questions posed by DataIQ how these health data hubs will operate. She said that each hub has a director from one of its constituent organisations with relevant expertise in their fields.
These directors are all from either a hospital, university or research institute. White also said that the organisations involved in the hubs will be working virtually, however, we have asked that each Hub provides a space for people to work together. These locations will use existing buildings.
White also went into further detail about the hubs.
Toni Sekinah: What is the purpose of these health data hubs?
Amanda White: What the hubs and the gateway are doing is making it easier for researchers to identify what information there is and to access it through a central point of contact subject to the usual restrictions and application processes.
TS: Are the hubs like data centres?
AW: The Hubs are not data centres. They are virtual hubs where people from different organisations can work together with patients to provide links to data, to curate it and make it more discoverable and accessible. The data is not being held in the hubs, it is continuing to be held in its constituent organisations – so for example in DATA-CAN, the cancer hub, the data held will be from organisations such as Leeds Teaching Hospital and the Cancer Registry. Data will continue to be stored by the current data custodians in safe environments in line with their legal responsibilities as ‘data controllers’.
TS: How will patients be consulted on the use of their data?
AW: Patients and the public have been involved in the design of this overall programme through events and discussions with patient groups. Health Data Research UK’s Public Advisory Board have provided input to the criteria for the Hubs, the expectations for public and patient involvement and the selection process for the successful Hubs. Each hub has had to demonstrate how patients and the public have been involved in shaping their proposals and their ongoing plans to involve patients in how data will be used. We see patients as being key partners in this work. Existing processes for use of data will continue to be in place and managed by the organisations that store and manage that data.
TS: How did the hubs put themselves forward?
AW: There was a structured application process, run as an open competition by MRC on behalf of UK Research and Innovation and Health Data Research UK. It is funded through the Industrial Strategy Challenge Fund (ISCF) Data to Early Diagnosis and Precision Medicine Challenge (D2EDPM). Twenty-one applications were received from partnerships of organisations that included NHS organisations, universities, charities, patient groups and companies. These were assessed by an independent panel and nine went through to interview with the same panel. Of the nine, seven Hubs were selected to receive funding and support and are expected to work as a single network.
