The National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care in England. In 2013, the EPPI-Centre was successful in leading a bid to be the NICE Research Support Unit (RSU), undertaking a range of research projects to support NICE in its work. These projects have included a thematic review on social values in health guidance, a review of the effectiveness of differing ways of organising committees, and the use of real world observational data for developing NICE guidance.
Our partners in the RSU are the universities of Auckland (P. David, B. Milne), Bangor (J. Noyes), Cambridge (I. White), Leicester (D. Jones), LSE (M. Knapp and J-L. Fernandez), Queen Marys (G. Wong), Sussex (J. Boddy) and LSHTM (N. Mays), and Kleijnen Systematic Reviews Ltd (M. Westwood, P. Whiting).
One of our projects has been concerned with 'real-world data' - and is described in more detail below.
Recommendations drawn from experimental evidence are not always useful for decision-makers who need to understand the implications of their decisions in real-world conditions. Awareness is therefore growing of the potential of evidence-based decision-making of real-world data.
These data are of interest here as they can:
- illuminate the effectiveness of interventions or practice in real-world (UK) settings;
- audit the implementation of guidance and recommended practice;
- provide information on resource use and help to establish the potential impact of guidance;
- provide epidemiological information.
Previous reviews in this area have identified a large number of sources, but have also emphasised that the diversity of sources has brought with it a plurality of approaches to data collection with respect to breadth, representativeness, and quality, among other issues.
In this project we intend to collect the views of experts in the field around which are the most promising sources of routinely-collected real-world data for assessing health and social care interventions and practice. This may be a tried and tested source, such as the Clinical Practice Research Datalink (CPRD), an underutilised source such as some disease registry databases, or a newly emerging source. Alongside collecting the views of experts, we will also be examining the literature in this area to examine some of the strengths and weaknesses of real world data, producing in-depth profiles of some of the most promising sources that experts identify, and we will examine how other organisations working in the field of Health Technology Assessment make use of real-world data in practice.
Clinical, public health and social care guidance provide evidence-based recommendations on how professionals and commissioners working within these fields should care for patients, service users and the wider public. Evidence-based clinical guidance aims to reduce variation in practice and improve levels of patient and service user care, while at the same time allowing clinical freedom for individual practitioners. The guidance produced by the National Institute for Health and Care Excellence (NICE) are not mandatory, although NICE does set out a business case in terms of the clinical and cost-effectiveness for implementation. Implementation in this sense signifies the active planned processes that take place to enable guidance-based best practice to become routinely embedded within day-to-day activity.
This review sought to investigate the strategies used to implement NICE guidance in routine practice, and particularly to examine the impact of implementation strategies operationalised by national level organisations and networks.
For more information
If you would like to get involved or would like more information, please email Dylan Kneale (firstname.lastname@example.org); alternatively please email if you would like to suggest a data source. Our intention is to compile a working list of the sources we uncover and that are named, and publish this on the EPPI-Centre website. The first iteration of this list should appear here in the next few weeks.