Clinical Digital Data Access
Digital health data are collected and produced in a variety of different environments, including GP practices, clinician offices, ambulatory procedure centres, hospitals, and nursing and extended care facilities. They are a powerful tool that can enable translational research, public health surveillance, digitally-enabled clinical trials and clinical studies, aiming to improve healthcare.
Patient and healthcare data is available for access through a variety of sources and organisations. Researchers from charities, academic institutions, and medical research companies can apply for access and use the data in secure environments, that ensure its protection and safe use. Each organisation has set different regulatory requirements to allow data access and processing. Interested parties, are required to submit detailed applications, that undergo independent review processes, to ensure the safe and confidential handling of sensitive data for clinical and research purposes.
Common sources of clinical data include the NHS and Research Data Scotland databases, the Health Data Research Gateway, the electronic Data Research and Innovation Service, the British Heart Foundation Data Science Centre, the Health Data Research Hub for Cancer, DataLoch, QResearch and the Clinical Record Interactive Search.
NHS Digital Datasets
The NHS provide a catalogue of data sets readily available to request through their Data access request service (DARS).
NHS Digital’s Data Security and Protection Toolkit is an online self-assessment tool that allows organisations to measure their performance against the National Data Guardian’s 10 data security standards.
NHS Digital have published a webinar on their Data Security and Protection Toolkit updates, featuring question and answers to common queries and issues, aimed at organisations who are working on their DSP Toolkits for 2022-23.
The NHS can provide safe, authorised access to patient data to help clinical trials that are developing new treatments to improve health and care. Information and guidance videos can be accessed on their online pages.
The Data Access Request Service (DARS), published by NHS Digital, can offer clinicians, researchers and commissioners the data required to help improve NHS services.
A comprehensive list of the estimated DARS service charges listed by service component is provided below. This information, along with the costs of applications, depending on their nature and requirements, and data services to support clinical trials and research can be accessed at the NHS Digital web pages.
HDRUK Gateway
The Health Data Research Gateway enables researchers to search, discover and request access to hundreds of datasets, tools and resources to support their research.
HDR UK also offer training courses on data analytics, bioinformatics, and a variety of other topics relative to translational research.
Research Data Scotland & eDRIS
Research Data Scotland support researchers with access to public sector data, making data accessible through their RDS data catalogue.
The electronic Data Research and Innovation Service (eDRIS) team enable UK wide data access in a secure, trusted research environment.
Information on the eDRIS costings are provided here.
SAIL & Honest Broker Service
The SAIL Databank helps researchers navigate the rigorous legal and regulatory framework surrounding the use of person-based data. SAIL reduce the risk to researchers associated with collecting, storing and analysing sensitive data.
The Honest Broker Service is the Trusted Research Environment for Health and Social Care (HSC) Northern Ireland and is hosted within the HSC Regional Business Services Organisation (RBSO/BSO). They provide approved researchers with access to linked, de-identified health data via a safe setting.
British Heart Foundation, DATA-CAN & DATALOCH
The BHF Data Science Centre is a partnership between Health Data Research UK (HDR UK) and the British Heart Foundation (BHF), within HDR UK. They work with a wide range of partners including patients, public, clinicians, researchers and NHS organisations to enable research using health data into the causes, prevention and treatment of all diseases of the heart and circulation.
The Health Data Research Hub for Cancer are a UK-wide partnership that provides access to health data for cancer researchers and healthcare professionals with a view to improving cancer care.
They provide a wide range of data, that can be accessed through the Health Data Research Innovation Gateway.
DataLoch enables applicants to access health and social care data from the South-East Scotland region, to facilitate healthcare research for the public interest.
Digital Data Access, Applications & Approvals
The Health Data Access Toolkit developed by the MRC Regulatory Support Centre, desribes the process that researchers wishing to acquire routinely collected NHS healthcare data need to follow. The Tool Kit provides information on the application process, along with common issues encountered by applicants.
The Integrated Research Application System (IRAS) is a single system for applying for the permissions and approvals for health and social care / community care research in the UK.
Research Ethics Committees (RECs) review research applications and give an opinion about whether the research is ethical. The NHS Research Authority describe the application and REC review process, whether this is part of HRA Approval or stand-alone.
Applications for Digital linical Data Access in Scotland is managed by the NHS Scotland Public Benefit and Privacy Panel for Health and Social Care (HSC-PBPP), and is conducted by the Public Health Scotland (PHS) electronic Data Research and Innovation Service (eDRIS)
The NHS Research Authority outline the provisions for the use of confidential patient information without consent for COVID-19 purposes.
Further Data Access points
OpenSAFELY is a highly secure, transparent, open-source software platform for analysis of electronic health records data, and provide tools that allow users use code to analyse patient data without needing to view the raw records.
The Education and Child Health Insights from Linked Data project is a research study run by University College London that uses and provides access to linked data to better understand how education affects children’s health, and how health affects children’s education.
The Secure Research Service (SRS) is a globally recognised service that uses the Five Safes Framework, a set of principles adopted by secure labs to provide researchers with de-identified, unpublished data to be used on research projects for the public good.
OneLondon is progressing the safe and secure join-up of health and care information. Their website features the “Conversation with Londoners”, that includes the world’s largest public deliberation on the use of health and care data, which are now being used to shape policy for London.
QResearch is a large database that includes anonymised health records of over 35 million patients from general practices spread throughout the UK and include data from patients who are currently registered with the practices as well as historical patients who may have died or left.
The Clinical Record Interactive Search (CRIS), is a technological tool developed by Cardiff University and the Cardiff and Vale University Health Board (CAVUHB), that will allow data to be safely and securely extracted from the Health Board’s electronic mental health clinical record system (called PARIS), de-identify it to protect patient identities and then load it into a separate and secure database.