https://phescreening.blog.gov.uk/2018/07/26/your-first-point-of-contact-for-access-to-screening-data/

Your first point of contact for access to screening data

Rachel Crowther
Rachel Crowther

Data collection and analysis is central to the safety and effectiveness of all screening programmes and we collect a wealth of NHS screening programme data.

PHE Screening research and evaluation coordinators Rachel Crowther and Siobhan Ryan are the first point of contact for policy makers and researchers who want to access screening data to explore new tests, treatments and theories.

Siobhan Ryan
Siobhan Ryan

Contact them on screening.research@phe.gov.uk if you are considering any research, service evaluation or audit activity that requires some type of screening data.

Some data is immediately available to the public but often it is not. Data may need analysis or legal assurances before sharing. Other data may be confidential or a sensitive resource.

Each of the 11 NHS screening programmes is responsible for ensuring data collected nationally and locally is managed in accordance with data protection and information governance legislation.

It is essential that any research, evaluation and audit using screening data is feasible, of high quality and protects the safety of patients and the public.

Research and audit must also be undertaken in line with current legislation and guidance. Access to data sets comprising identifiable or potentially identifiable screening data or tests requires appropriate legal gateway assurances.

Examples of data analysis that have benefited screening include the piloting of the faecal immunochemical test (FIT) for haemoglobin in the bowel cancer screening programme and the piloting of primary HPV screening in the cervical screening programme.

The FIT pilot enabled PHE Screening to test the implications of replacing the current guaiac-based faecal occult blood test (gFOBt). The primary HPV screening pilot assessed the feasibility and acceptability of introducing primary HPV screening into the cervical screening programme.

Research advisory committees and application process

There are 6 national research advisory committees and a review process to make sure proposals:

  • are workable
  • are of high quality
  • protect patients’ interests

We have published new national guidance on GOV.UK that explains the:

  • role and terms of reference of the research advisory committees
  • application process to access data
  • legal and ethical issues

The committees cover screening for:

  • abdominal aortic aneurysm
  • antenatal and newborn screening
  • bowel cancer screening
  • breast screening
  • cervical screening
  • diabetic eye screening

In due course, we will develop separate guidance for each of these 6 committees, with details of submission deadlines, committee membership and decisions.

We hope screening providers, commissioners, public health colleagues and researchers find this new information useful as we aim to make the best use of high quality data to improve screening services in England.

We are interested in hearing from you as early as possible whether your project is a small local audit or a large programme of academic research.

PHE Screening blogs

PHE Screening BLOG articles provide up to date news from all NHS screening programmes. You can register to receive updates direct to your inbox, so there’s no need to keep checking for new blogs.

Leave a comment

We only ask for your email address so we know you're a real person