Cancer: Research

(asked on 4th February 2015) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what representations he has received on difficulties faced by medical researchers in accessing data for cancer research purposes.


Answered by
George Freeman Portrait
George Freeman
This question was answered on 9th February 2015

The Department has established the Clinical Practice Research Datalink (CPRD) from 2012, under a multi-disciplinary team hosted as part of the Medicines and Healthcare products Regulatory Agency. The aim of the CPRD is to make it possible for researchers to access anonymised linked National Health Service data for research studies. The CPRD provides access to a wealth of data including cancer registers whilst ensuring only secure access to the data in strict accordance with United Kingdom and European law and the rules and regulations operating in the NHS.

Following the review of data releases made by the NHS Information Centre, published in June 2014, the Health and Social Care Information Centre (HSCIC) introduced stricter governance controls and more stringent quality checks before data can be shared.

To ensure timely access to data continues, the HSCIC has undertaken a significant programme of work over the past eight months to improve the efficiency of the service.

This has included:

- Setting up a single point of contact for the management of data access applications: the Data Access Request Service (DARS). Details of the DARS process are published on the HSCIC website at www.hscic.gov.uk/dars. A programme of work is underway to ensure that applications for primary care data, currently overseen by the General Practice Extraction Service Independent Advisory Group, and those with separate governance processes, are managed and tracked consistently by the DARS service;

- Developing a single application form, data sharing contract and data sharing agreement, along with supporting guidance notes;

- Strengthening the membership and increasing the frequency of meetings of the Data Access Advisory Group (DAAG). (DAAG is the key HSCIC body that makes recommendations on applications for HSCIC data dissemination.); and

- Establishing new communications channels with customers including fortnightly bulletins, and assigning named case managers to each data application, working closely with those applying for data to help them understand and respond to the stricter requirements for approval.

Reticulating Splines