About CIPHER

Centre Overview

Full Title
The Centre for Improvement in Population Health through E-records Research (CIPHER)

Value
£9.3 million

Funder
A consortium of 10 UK Government and Charity Funders led by Medical Research Council (MRC)

Leads
Professor Ronan Lyons, Director (Swansea University)
Professor David Ford, Deputy Director (Swansea University)

Co-Investigators
For the full list of Farr Institute @ CIPHER co-investigators please click here.

Website
The Farr Institute @ CIPHER http://www.farrinstitute.org/centre/CIPHER/34_About.html part of The Farr Institute of Health Informatics Research http://www.farrinstitute.org/

Background

The Centre for Improvement in Population Health through E-records Research (CIPHER) is one of the four co-ordinating centres of the Farr Institute. It is a multinational research partnership between academia, the UK national health service (NHS) and industry, focussed on improving the lives of patients and the population through informatics.

CIPHER is coordinated from Swansea University and includes a considerable number of investigators from UK universities and others from Europe, North America and Australia.

Vision
CIPHER aims to harness existing strengths in health informatics research to address translational delays between knowledge discovery, intervention assessment and adoption, and population impact by:

  • Developing collaborations to link previously isolated silos of expertise in observational, interventional, biomedical and social sciences;
  • Improving knowledge exchange between academic, practitioner and policy leads; and
  • Liberating information trapped in data islands.

CIPHER will add value by maximising the utility of available routine health-related data on the UK population, provide robust methods to link such data to UK cohorts, surveys and non-health administrative data, enhanced by collection of novel population level data on health status, behaviours and exposures.

Embedding cohorts, trials and survey data within this total population structure will enhance UK observational and interventional research capacity and efficiency, support policy decision making, and quantify the impact of investment in scientific research on population health and wellbeing.

Cross-national collaboration is designed to increase the scale, breadth and global impact of CIPHER research.

Research
CIPHER undertakes research that covers both observational and interventional research across all disease areas with an emphasis on methodological innovation and development in e-records research, including public engagement.

There are a number of specific research programmes on injury, the built environment, substance use, mental health, infection and child health, as well as the traditional major chronic diseases. Child health improvement research is carried out in collaboration with the DECIPHer Public Health Research Centre of Excellence.

Adding value to cohorts is a particular focus within CIPHER and there is a number of funded studies involving ALSPAC, the Millenium Cohort Study, UK Biobank, and cohorts within the MRC UK Dementias Platform as well as total population anonymised e-cohorts, such as the Wales Electronic Cohort for Children.

Other research foci include the use of linked data in trials and the evaluation of natural experiments including both health and non-health-care interventions.

To find out more about the eHealth and Informatics Research at Swansea University, please visit www.healthinformatics.swansea.ac.uk

Capacity Building

In addition to the cross UK collaborative work highlighted on the national pages, the aims of capacity building at CIPHER are seen as:

  1. Building capacity amongst the CIPHER workforce by extending existing skills;
  2. Building capacity amongst the wider research community, including the NHS and industry, by introducing researchers and practitioners to new skills;
  3. Building capacity by providing a career framework for data scientists, from school leavers to post doctoral researchers.

Currently, CIPHER offers an introductory and advanced course in the analysis of linked health data at Swansea University, in collaboration with the University of Western Australia. These courses are also incorporated into the MSc in Health Informatics, where they contribute to a health data pathway within the course.

In order to achieve aims 1 and 2, a number of technical, practical and skills-based short courses at undergraduate level are currently being developed. The first of these will be available from Spring 2014. These will provide the basis for a part-time degree framework and a potential undergraduate entry scheme. Masters level modules are also being planned, and opportunities for PhD studies will be developed.

Finally, it is recognised that the NHS faces enormous developmental needs as it embraces a culture of informatics driven improvement. In order to help fulfil these needs, a range of materials and short seminars are also being developed for NHS informatics and clinical staff.

Public Engagement

In CIPHER we are committed to working collaboratively in Public Engagement and to involving consumers fully in all relevant stages of our work by:

  • Facilitating the operation of a strong and inclusive Consumer Panel for Data Linkage Research, to advise, support and advocate our work;
  • Involving patients, service users, carers and the general public in our research;
  • Building and maintaining a web-based public information resource that showcases the benefits of data linkage research;
  • Hosting and participating in, regular events designed to be of interest to members of the public.

Working together with the Consumer Panel, our next steps are:

  • To build community-facing networks emanating from the Consumer Panel and its individual members;
  • To create a dynamic, web-based repository of lay summaries on all aspects of our work;
  • To design and hold events and seminars for members of the community, researchers and other stakeholders on health-related subjects and on public engagement.

If you would like to know more or receive information on the Public Engagement work of CIPHER, please contact Dr Christine Dobbs or Associate Professor Kerina Jones.

Innovative Governance

Robust, proportionate governance solutions are required to underpin the trustworthy reuse of data for research. 

CIPHER investigators have considerable experience in this field, having developed the governance infrastructure underpinning the Secure Anonymised Information Linkage (SAIL) system. 

CIPHER aims to increase the scale and depth of data available for research across the UK by: 

  1. Sharing information on existing and developing best practice;
  2. Working with the four UK NHS information centres to broker standardised approaches to support national studies;
  3. Developing new approaches to liberating data from health and non health-care organisations, for example through the development and implementation of novel Research Data Appliances or the distribution of natural language processing tools;
  4. Development of facilities and approaches to improving researcher access to large scale and complex linked datasets, such as through the UK Secure eResearch Platform (UK SeRP);
  5. Ensuring developments are understood by and acceptable to the public through a process of public engagement at all levels of activity.