Table 5.

Recommendations to improve access to routinely recorded data for research

General

Routinely recorded data are being used to measure randomised controlled trial (RCT) outcomes with the agreement, additional benefits and cost-efficiency of such data compared to data recorded through standard RCT methods being unknown Further research should be performed to assess the agreement, additional benefits and cost-efficiency of accessing routinely recorded data to measure RCT outcomes compared to data collected through standard RCT methods

The costs required for data access from routine data sources vary widely, although all reportedly operate on a cost recovery, not-for-profit basis Costs should be standardised and rationalised between routine data sources

The time lag before data are available in routine data sources represents a significant limitation to the access of routinely recorded data for prospective research, including RCTs The infrastructure and procedures should be developed to reduce the time lag seen in routinely recorded data sources

The requirement for linkage between sources of routinely recorded data has been observed and improvements are on-going; for example, with the establishment of the Administrative Data Research Network (ADRN) A standardised set of identifying variables could be recorded by all (clinical and non-clinical) data sources to improve the accuracy of data linkage, similar to a Core Outcome Set for clinical trials [44]

The public mistrust in the sharing and linking of routinely recorded data will hamper future efforts to develop routinely recorded databases, despite the likely benefits to individual patients and the population Further research and public engagement should be undertaken to define the issues of most importance to the public and develop strategies to address these

Clinical routine data sources

There are numerous requirements prior to application, and criteria to fulfil on submission, of an application, yet the guidance and support during development of an application remains limited Formalise and improve access to guidance and review of study materials during the ‘pre-application stage’

There is national coverage of routinely recorded secondary-care data, yet primary-care coverage remains patchy, based on geographical area or GP IT system Develop the primary-care data sources to provide national coverage, either through collaboration of existing sources and data linkage or development of national data sources, such as the General Practice Extraction Service

Non-clinical routine data sources

Access to non-clinical data sources to inform clinical research was not possible during this study, despite the significant potential to inform Health Technology Assessment and the increasing importance of such assessments in a health care system where resources are increasingly limited To assist with Health Technology Assessment, and particularly the analysis of health economic outcomes, urgent research is required to consider facilitating access to individual-level, identifiable data from non-clinical sources. This would include: 1. Research regarding the public perception and acceptability of using their personal economic data for clinical research 2. Internal review within non-clinical sources, such as the DWP and HMRC, to assess the feasibility and limitations of permitting access to data for clinical research 3. Formalisation of the approval processes through the independent party, the ADRN for access to non-clinical administrative data – currently, following internal approval the ADRN then negotiates access to administrative data on a project-by-project basis