Introduction to the James Lind Alliance and priority setting
The James Lind Alliance (JLA) is non-profit making initiative which was established in 2004 with the aim of enabling groups of patients/carers and clinicians to agree together on priorities in treatment uncertainty research. The JLA thus facilitates Priority Setting Partnerships (PSPs) in particular conditions.
Each PSP consists of patients/carers and their representatives, and clinicians, and is led by a steering group. Collaboration of this sort whereby patients and clinicians together set the research agenda is extremely rare, but vital in drawing issues to the attention of research funders which might not otherwise be suggested or prioritised.
The role of the PSP is to identify questions about potential treatments or ways of managing patients, which have not been answered by research to date, and to then prioritise these. An interim priority setting exercise takes place over email or by post, and a priority setting workshop is then convened where partners debate and finally arrive at a top 10 list of shared uncertainties which are most important to them.
The aim is then to “translate” these uncertainties into research questions and obtain funding for that research.
Further details are on the JLA Website.
The Emergency Medicine Priority Setting Partnership
Emergency Medicine is a broad subject area, and includes a variety of different medical subject areas, such as acute medical emergencies, minor illness and injury, major trauma, acute mental health problems and the management of elderly patients with complex co-morbidities and social problems. Paediatric emergency medicine is outside the scope of this project.
Academic Emergency Medicine has blossomed in the last two decades, and emergency medicine researchers are now performing large prospective randomised controlled trials on emergency patients to answer the most pertinent clinical questions. Research prioritisation is important in terms of shaping future research questions in Emergency Medicine, and the specialty is keen to involve all relevant stakeholders in the process.
An initial approach was made to the JLA in 2014, following which a formal partnership was agreed in April 2015.
The wider aims and responsibilities of the Emergency Medicine PSP are set out in the JLA Protocol.
About the steering group
The steering group is responsible for coordinating and implementing the activity of the PSP. Drawing on members’ expertise and networks, the steering group will help encourage membership to the wider PSP and, where members have the capacity and expertise, will carry out the practical work needed to collate the interim and final priority setting exercises. The steering group is also responsible for ensuring research funders are made aware of the final top ten uncertainties.
Membership of the steering group includes representatives of organisations which can reach and advocate for patients and clinicians, as well as JLA staff. Like the rest of the PSP, steering group members are expected to participate in the priority setting exercise.
The steering group is chaired by Mr Richard Morley, a James Lind Alliance Adviser, to ensure transparency.
Tasks
The Emergency Medicine PSP steering group members are expected to participate in a number of specific tasks during the course of the priority setting process:
- Telephone conference calls to update on progress.
- Working with UK DUETs to record uncertainties that are identified in the PSP.
- Publicising the initiative to potential partners to encourage them to join the PSP. This includes advising on membership of the PSP (to ensure a wide and representative group of patients and clinicians) and emailing contacts to invite them to participate.
- Managing the collection of treatment uncertainties from patients, clinicians and existing literature.
- Overseeing the process of checking and verifying the submissions as true uncertainties before prioritisation can begin.
- Managing interim priority setting. This involves working with the JLA and UK DUETs to develop the interim priority setting questionnaire, based on the uncertainties identified during the process.
- Collating the results of interim priority setting and producing an “interim top 20-30” to take to the final priority setting workshop.
- Participation in the final priority setting exercise. A one-day workshop which brings partners together (one representative per organisation) to debate, rank and agree a final top ten.
- Publicising the final top 10 uncertainties to the sector and to research funders. This includes working with the National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC) to develop applicable priorities into research questions.
Level of involvement and resources
Steering group members are asked to contribute, at a minimum, their expertise and their time. Basic involvement, as listed above requires:
- an interest in the initiative and outcomes being pursued in the project
- a broad understanding of project management issues and the approach being adopted
- commitment to working with other members respectfully and constructively
- advocacy for the project’s outcomes
- prompt feedback on prioritisation materials
- participation in the monthly telephone conference calls
- the sharing of networks and contacts for membership of the PSP
- participation in the one-day final priority setting workshop
- taking the time to bring the top ten Emergency Medicine uncertainties to the attention of funders
Administration
To be provided by Royal College of Emergency Medicine’s Quality Team. This includes making arrangements for all meetings and workshops, and ensuring:
- requests for agenda items are discussed with the group
- papers will be available at least a week before meetings
- meeting notes will be circulated within two weeks
Timescales
The Steering Group will be convened by September 2015, and the first round of invitations to participate will be ready to be distributed at that time.
The Emergency Medicine PSP will be formally launched in September 2015 at the RCEM Annual Scientific Meeting, and will aim to complete within 2 years.
Key contacts
- Chair: Mr Richard Morley
rmengagement@gmail.com
Tel: 07790 165592 - Royal College of Emergency Medicine: Professor Jason Smith
jasonesmith@nhs.net
Tel: 01752 437629 (NHS) / 0121 415 8848 (MoD) - Administration:
Sam McIntyre, Quality Team, Royal College of Emergency Medicine
Sam.mcintyre@rcem.ac.uk