LAUSR

We read with great interest the recent publication of the priorities of child health research across the UK and Ireland. A crucial aspect of any research undertaken is the voice of the patient and their carers and in the context of the child, their parents. It is now becoming well established that they should all actively contribute, through discussion, to decision making regarding research design, acceptability, relevance, conduct and governance from study conception to dissemination. Importantly, a similar level engagement is important in research priority settings. Children and their carers should therefore be involved in setting priorities from the outset including generating and formulating the important areas of research uncertainties. This inclusivity is essential to ensure priorities identified actually reflect their needs and will improve their outcome, as often, even when researchers address questions of importance to patients and clinicians, they fail to provide answers that are useful in practice. A robust methodology exists, established by the National Institute of Health Research (NIHR) and the James Lind Alliance (JLA) to bring patients, carers and clinicians together in Priority Setting Partnerships (PSPs). Briefly, a working group comprising of patient, parent and clinician representatives with the help of a wide range of stakeholders identifies research uncertainties gathered through an open platform survey and from existing national and international research recommendations. In scope uncertainties are screened against published systematic reviews and active clinical trial databases to confirm that they are unanswered and then aggregated to generate relevant research questions for interim multiple stage prioritisation before the final research priorities are identified. Importantly, this JLA methodology also carefully monitors and encourages involvement of ethnic and diverse groups within research priority setting. In a recent UK government report, the ‘need for more Black and Asian people to participate in health trials so that medical research will be based on data that comes from the whole population’ was highlighted. Black, Asian and minority ethnic people are underrepresented in research, despite widespread and persistent ethnic inequalities in health. There is an urgent need for ethnicity, diversity and inclusivity to be key in setting research priorities. In 2020, the JLA approached its 16th year being established having completed 100 PSPs. Although the benefits of such initiatives are not always easily measurable, the key involvement of patient is likely to lead effective adoption of research and ultimately reduce wastage of resource. While their focus was on generating priority research topics, wider impacts include enhanced relationship and network strengthening and downstream alignment between priorities and funding bodies.