Stage 1 – Setting up the Steering Group
A Steering Group is required to coordinate the PSP and organise its activities. They create a plan of action, or ‘protocol’ for the project. The Steering Group is Chaired by an adviser from the JLA. Members of the Steering Group include professionals, parents and patient representatives.
Steering group members Protocol
Stage 2- Identifying potential ‘Partners’
Potential partner organisations are identified and approached to be involved in the PSP. These ‘Partners’ include organisations which represent professional groups, patients and their families/carers and charities with an interest in Children’s Cancer. They help to publicise the PSP and work with their members and networks to identify important topics or areas of concern that research should address; to find out what those ‘unanswered questions’ might be.
Stage 3 - Gathering the ‘unanswered questions’
Questions are usually gathered from patients, carers and professionals via an online or postal survey; this would focus on what they think are important areas for research that has not yet been carried out. In this PSP, as we want to understand what matters to children, we will also use creative, face-to-face methods to work with them.
Stage 4 – Summarising the responses gathered
The survey produces “raw” questions from those who have responded. These need to be refined into ‘real’ questions that researchers can use; questions that are clear, can be addressed by research and are understandable to all. The PSP sorts all the responses gathered; similar responses are combined and those that are ‘out of scope’ are removed. Some of those ‘out of scope’ responses may be followed up if this is needed.
Stage 5 – Evidence checking
The questions are checked against existing research evidence to see if they have already been answered. Any questions that have already been answered are removed.
Stage 6 – Interim priority setting
In this stage, we will move from having a long list of questions to a shorter list. This will involve another online survey where the respondents choose and rank their most important questions. Again, we will involve children in this process. A shortlist of about 25-30 unanswered questions is then produced.
Stage 7 - Workshop
The highest ranked (most important) 25-30 questions from stage 6 are discussed in a workshop attended by patients, carers and professionals who together agree the Top 10 list of priorities. For this stage there will be three JLA Advisers who will facilitate this workshop and ensure this process is carried out fairly.
Stage 8 - Publish and promote the Top 10 priorities
The Top 10 is announced, published on the JLA website and promoted to researchers and funders. We want to encourage researchers to focus on research based on the priorities identified and research funders to work on these priority areas. To let these groups know about the priorities we will actively promote them by:
- Having a meeting for research funders to tell them about the priorities
- Publishing a journal paper
- Publishing a final report
- Asking our Partner organisations to promote them via their networks
- Using social media
- Presenting at conferences.
More information, including a short video explaining the process, is available on the James Lind Alliance website.