For CanROC, the word “public” is used to represent the collective communities of survivors, families, bystanders and public who have an interest in improving survival from sudden cardiac arrest. We know that public engagement in CanROC research will improve the relevance of the trials and studies we do and improve their translation into every day practice, contribute to more effective health services and products, and ultimately, improve the quality of life for those that suffer cardiac arrest & trauma. Underpinning this approach are guiding principles to which all CanROC partners have agreed to adhere to in pursuing the goal of full integration of public partners into our research and governance. These include full support for public partnerships at all tables, embracing diversity and mutual respect at all stages of our research & priority setting endeavours.
Building on the public engagement infrastructure the Canadian Resuscitation Outcomes Consortium (CanROC) has put in place, we feel it is important to take the next step and engage our community in identifying research priorities from all perspectives, in particular examining where our priorities converge and diverge so that we can build a robust research agenda that speaks to everyone impacted by sudden cardiac arrest. And so the Cardiac Arrest Priority Setting Partnership (PSP) was born!
We have partnered with James Lind Alliance in the UK to leverage their robust priority setting methodology for this project - read more about them and the PSP method below!
The James Lind Alliance (JLA) was established in the UK in 2004 by Sir Iain Chalmers (co-founder of the Cochrane Collaboration), Dr John Scadding (then Dean of the Royal Society of Medicine) and Sir Nick Partridge (former Chair of INVOLVE).
The James Lind Alliance (JLA) believes that:
Research on the effects of treatments often overlooks the shared interests of patients, carers and clinicians. As a result, questions that they all consider important are not addressed and many areas of potentially important research are therefore neglected. The JLA exists to help address this imbalance.
Even when researchers address questions of importance to patients and clinicians, they often fail to provide answers that are useful in practice. Another purpose of the JLA therefore, is to address the mismatch between what researchers want to research, and the practical information that is needed day-to-day by patients and health professionals.
The JLA method is designed to change the way research funding is granted, and to raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them.
An introduction to the JLA (pdf, 1032.26 KB) is available as a leaflet.
The first Priority Setting Partnership (PSP) was completed in Asthma in 2007. It was described as a ‘JLA Working Partnership’ involving the British Thoracic Society and Asthma UK. To find out more about the areas in which PSPs have been identifying the uncertainties which really matter, please visit the PSPs section of the JLA website.
Priority Setting Partnerships (PSPs) enable clinicians, patients and carers to work together to identify and prioritise uncertainties about the effects of treatments that could be answered by research. While the James Lind Alliance (JLA - http://www.jla.nihr.ac.uk/ facilitates these partnerships, the funding and organising is done by the PSP itself.
Focusing on specific conditions or healthcare settings, PSPs:
The JLA PSP process results in a Top 10. The aim of the Top 10 is to highlight important areas for research, but not necessarily to come up with the specific research questions. The Top 10 may include broader areas of importance where patients, carers and health professionals have agreed that there is a need for research. This informs researchers and research funders about priorities so that they can make their research as meaningful as possible to the people who need it.JLA PSPs are characterised by following the method set out in the JLA Guidebook and are facilitated by a small team of JLA Advisers.
To ensure consistency, the JLA asks each PSP to conform to a set of underpinning principles. These are: