Core Programme 3: Engaging Researchers
Prof Paul Boyle, Prof Jeremy Wyatt
Aims
- To host a biennial conference Exploiting Existing Data for Health Research
- To develop and deliver training programmes and workshops for EPR research
Background
Despite the progress that has been made in developing a remarkable Scottish research infrastructure, "engagement" across different interest groups could still be improved. This is true in Scotland and internationally. Thus, while numerous academic and medical practitioner groups have used EPRs in their research, there has been no regular international forum to debate the methods used, the policy impact of such research and the ethical issues, including confidentiality and consent, associated with such studies. A second shortcoming is the lack of regular and comprehensive training in the various aspects of record linkage and analysis of the combined datasets, in either the UK or elsewhere.
Deliverables
In September 2007 we hosted the first ever international conference on Exploiting Existing Data for Health Research . The three-day conference attracted over 120 participants from across the world (e.g. NZ, Australia, US, Canada, Europe etc). We will establish this as a regular biennial event in 2009 and 2011 with five themes: The value of record linkage in health research; Record linkage for health care improvement; Longitudinal record linkage; The methodological challenges of record linkage; Confidentiality, disclosure and ethical issues. We will invite leading-edge plenary speakers, will organise round table discussions and poster displays and encourage attendance from postgraduate junior and senior academics, as well as relevant policy-makers. Some public engagement activities will be hosted at the conference, allowing the public, researchers and policy makers to engage more fully. We anticipate it will become the major forum for introducing newcomers to best practice, debating and sharing solutions to thorny issues of confidentiality and ethics, and will provide a stage for people to present innovative methods for record linkage and results from studies that use such data.
As part of our core activities we will also establish a training programme which provides introductory, mid-level and advanced training to existing and new researchers. It will provide core skills, but will be adaptable, responding to the changing demands of the different user-groups. A key aim is to build capacity in record linkage, through interacting with world leading trainers from Scotland and abroad. Workshops will be hosted every six months. Example topics include: Introducing Scottish record linkage; State-of-the-art methods in record linkage; Statistical methods for analysing routinely collected health data; Longitudinal modelling approaches; Respecting personal privacy and information governance. Places will be available for SHIP researchers, but also for researchers from the rest of the world. We expect this to become the pre-eminent training series in the world.