Chapter 1: Introduction
Welcome to the James Lind Alliance (JLA) Guidebook. The Guidebook is aimed at people interested in the JLA’s priority setting process: namely, patients and their carers, clinicians and the organisations that represent them. It is a step-by-step guide to establishing and managing a Priority Setting Partnership (PSP) and the principles behind it. PSPs bring patients, their carers and clinicians together to identify and prioritise unanswered questions (or as they can sometimes be referred to ‘evidence uncertainties’) in specific conditions or areas of healthcare, for research, using JLA methods.
When the JLA was originally conceived, the term ‘treatment uncertainties’ was used to define the unanswered questions that are identified and prioritised in a PSP process. We now use the term ‘evidence uncertainties’ instead. This reflects the broader scope of many PSPs that include uncertainties around interventions that are beyond ‘treatments’, such as care, support and diagnosis. Some PSPs extend their scope further to include evidence uncertainties relating to cause or prognosis.
This change in terminology was an important development for the JLA, intended to reflect the changing health and care landscape and the evidence needed to support this landscape. The change was made following consultation with the wider community at a JLA stakeholder event in 2017.
Although the term ‘evidence uncertainty’ is used to describe unanswered questions in this Guidebook, each PSP may agree to use their own terminology in order to reflect the uncertainty within their setting or condition. The JLA simply requires transparency around how that terminology is defined and used.
The Guidebook is intended to help PSPs work effectively using established methods to ensure credible and useful outcomes.
Examples from PSPs:
Throughout the Guidebook you will find sub-sections with examples that help to explain how PSPs have approached parts of their work.