NICOR: National Institute for Cardiovascular Outcomes Research

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MINAP Academic Group

Background

We recognize the value of the MINAP data, certainly in improving patient care but also in its secondary use amongst others, for research. Therefore, in 2005 the MINAP Academic Group (MAG) was established to maximise the research potential of MINAP database and to establish processes for the safe distribution and return of sub-sets of MINAP data to research groups. The MAG is responsible for ensuring that data are only accessed by researchers with bona fide projects of high scientific probity who respect the conditions of confidentiality and security. MAG was delegated the responsibility for releasing MINAP data by the Health Quality Improvement Partnership (HQIP) through which MINAP is funded.

MAG Membership

MINAP Academic Group reports to MINAP Steering Group and is chaired by Prof Adam Timmis (pictured).

The MINAP Academic Group (MAG) meets bimonthly to discuss the new applications, progress made and other related matters.

• MAG members list (word document)

Current position

The last year has seen major developments driven by the MINAP Academic Group. We now have a truly nationwide programme incorporating many of the top cardiological and epidemiological research groups in the UK. In the last 12 months alone approvals have been given for data-sharing with researchers in London, Birmingham, Belfast, Leeds, Leicester and Edinburgh. The academic fruits of earlier applications led to seven publications in major cardiovascular and general journals in 2010, more than ever before, with a further four publications to May 2011.

 Particularly significant has been the establishment of international collaborations with the SWEDEHEART investigators in Upsalla (Sweden) to complement the international collaborative analysis of pre-hospital thrombolysis previously undertaken in Europe and North America.

The development that will underpin research activity through the next decade and beyond has been the successful bid by the NICOR executive to take over custodianship of MINAP and five other national cardiovascular registries. Leaders within MINAP and MAG played a key role in securing the bid which will now allow a more hands on approach to the management and linkage of this unique data resource. Only in the UK are national registry data on this scale available providing opportunities for cardiovascular researchers that cannot be found elsewhere.  

Publications

• List of current publications (word document)

Data and Patient confidentiality

Although NICOR (UCL) was granted Section 251 exemption of the NHS Act 2006 for all the cardiac audits, including MINAP to hold patient identifiable data without consent, this approval is not extended to release of patient identifiable data. We are however in a position to release data for research in anonymised, or pseudo-anonymised form. Where the linkage of two datasets is required, trusted 3rd party is employed to perform the linkage and data are released in pseudo-anonymised form with an assigned unique identifier.

Cost

MINAP now contains over 1 million records and has had 100% participation since 2003. Its data have been available for research through application to MINAP Academic Group since 2005. The currently available dataset spans from 2003 to 2011 including vital status and an interval to death. MINAP receives no funding from HQIP for the research it supports. Data sharing with researchers attracts a fee that has been calculated to meet the costs of data management, processing of applications and preparation of extracts.

Type of research	Fee
Academic	£5,000
Commercial	≥£10,000 plus VAT (by negotiation)
Annual update including vital statistics	£1,000 plus VAT

Note: additional cost will apply for applications requiring cross-registry linkage depending on the complexity of the work involved.

Points to consider

We recommend that researchers consider carefully the challenges of analysing large complex observational data which have been routinely collected by healthcare professionals. Researchers may wish to consider the implications of using incomplete and incorrect data and that of reporting unadjusted outcomes. For example, researchers may incorporate statistical methods to allow more efficient inferences without the distractions of missing data and to consider modelling strategies to adjust for confounders.

You may wish to refer to:

'Multiple imputation for completion of a national clinical audit dataset'. Cattle BA, Baxter PD, Greenwood DC, Gale CP, West RM. Stat Med. 2011 Sep 30;30(22):2736-53. doi: 10.1002/sim.4314. Epub 2011 Jul 22.

'Impact of missing data on standardised mortality ratios for acute myocardial infarction: evidence from the Myocardial Ischaemia National Audit Project (MINAP) 2004-7'. Gale CP, Cattle BA, Moore J, Dawe H, Greenwood DC, West RM. Heart. 2011 Feb 28. [Epub ahead of print]

How to apply

An application pack can be downloaded from the NICOR Data Applications webpage.

Submission date	Review date
4 February 2013	18 February 2013
3 April 2013	17 April 2013
3 June 2013	17 June 2013
4 September 2013	18 September 2013
4 November 2013	19 November 2013

For more information on how to make an application for MINAP data please email Lucia Gavalova, MINAP Project Manager at l.gavalova@ucl.ac.uk.