Research

Why is it important?

The Health and Care Act 2022 introduced a statutory duty for the ICB to comply with, in respect of research:

Each ICB must facilitate or otherwise promote: (a) research on matters relevant to the health service and (b) the use in the health service of evidence obtained from research.

Research plays a crucial role in advancing healthcare practices and improving patient outcomes. By collaborating with academic institutions and enabling access to de-identified data, the ICB aspires to enable researchers to uncover patterns and trends that can lead to innovative solutions for complex health problems. In a rapidly changing healthcare environment, research informs evidence-based practices, ensuring that medical professionals have the latest knowledge to guide their decisions.

Furthermore, research is essential for identifying health disparities and understanding the unique needs of different populations within South Yorkshire. By focusing on local data, researchers can tailor interventions to effectively address the specific challenges and inequalities faced by communities. This not only enhances the quality of care but also fosters a more equitable healthcare system where all individuals have access to the services they need.

Investing in research also enhances the reputation of the region as a hub for health innovation, attracting further partnerships and funding opportunities. Ultimately, prioritising research within the healthcare framework leads to a healthier population, reduced healthcare costs, and improved overall community well-being.

How will it be done?

In order to meet it’s statutory duty, and enable the sharing of NHS data with research partners, the ICB is looking to implement a process similar to that used for sub-licensing.

Research organisations looking to receive data under sub-licensing arrangements will have sign a data sharing agreement, holding them to certain conditions, like keeping their registration with the Information Commissioners Office current and submitting a standards met annual Data Security and Protection Toolkit.

To safeguard personal information, the data will undergo a process known as anonymisation. This means that any identifiable information, such as names and addresses, will be removed. The data will be separately provided to research partners, outside of the ICB data warehouse, in a place known as a Secure Data Environment (SDE).

For partners to receive patient level anonymised data sets for their own analysis, they will have to submit an application to the ICB, explaining the data needed, cohorts of patients to be included, the purposes and justification for the work they want to do and why that data is necessary. All of which will be considered by a sub-licensing board – at a minimum this approvals group will consist of the ICB’s Caldicott Guardian, a board level Chief Clinical Information Officer (CCIO), Higher Education representation, and engagement from the community in the form of a public representative.

What will be the outcomes?

Research conducted using this data will lead to new medical insights, improved treatments, and more efficient healthcare delivery. It will support the development of policies and practices that better meet the needs of the population, contributing to the overall improvement of public health.