Reaching people with direct experience of epilepsy to prioritise topics for Cochrane Systematic Reviews: discussion of approach, results and impact on Review Group work plans


Oral session: Patient or healthcare consumers involvement and shared decision-making (4)


Thursday 24 October 2019 - 14:00 to 15:30


All authors in correct order:

Nevitt S1, Hill R1, Crowe S2, Pullen A3, Kelly R1, Greenhalgh J1, Bresnahan R1, Marson T1
1 Cochrane Epilepsy Group, UK
2 Crowe Associates and Cochrane Prioritization Methods Group, UK
3 Epilepsy Action, UK
Presenting author and contact person

Presenting author:

Sarah Nevitt

Contact person:

Abstract text
Background: epilepsy is a common neurological condition in which recurrent, unprovoked seizures occur due to abnormal electrical discharges in the brain, accounting for 1% of the global burden of disease. Cochrane Epilepsy has developed a collection of 104 reviews and 29 protocols that aim to support decision making and better care for people with epilepsy.

In recent years, Cochrane has recognised the need for a more accountable and systematic approache to selecting research topics for systematic reviews and updates. This has included development of a Cochrane Priority List of Reviews; guidance on conducting topic prioritization and an expectation that Review Groups will identify their priorities and plan towards addressing priority reviews.

Objectives: our objective was to develop a topic prioritization exercise to shape a programme of work funded by the (UK) National Institute for Health Research (NIHR; 16/114/26). In our presentation we will describe and discuss our approach to ‘topic refinement’ (a process combining prioritization of topics and the outcomes used to explore those topics), as well as findings and impact on review development.

Methods: to develop our topic refinement, we performed a search for existing prioritization exercises and outcome sets and we considered a range of approaches including ways to develop effective engagement with diverse stakeholders. We also referred to approaches by Cochrane Priority Setting Methods Group, James Lind Alliance, NICE (National Institute for Health and Care Excellence) and to the REPRISE checklist.
We opted for a pragmatic approach of an online survey focused on 26 topics selected by our Editorial Board. The survey guided respondents to select their top 10 topics, then their top 5 topics, then rank these 5 topics. It also offered opportunities for respondents to suggest additional priority topics and to comment on their reasons for prioritising each of their top 5 topics. The survey was open through late 2018 and was promoted via a key stakeholder partner (Epilepsy Action) and across social media.

Results: 503 responders selected topics in their top 10, 487 in their top 5 and 454 ranked their top topics (top 5 priorities are in figure 1). We received over 1200 comments sharing reasons for topic choices and over 500 comments on topics respondents also thought where important. Respondents were largely people with epilepsy, carers or family members (88%) and from the UK (94%).

Conclusions: our survey achieved both reach and depth across a range of people with experience of epilepsy and gathered a variety of views on review topics. The survey was able to discriminate five higher-priority topics, including support for a prognosis review. Views also included a range of rich information on how evidence should be considered in Cochrane Reviews in terms of patient priorities and relevant outcomes.

Patient or healthcare consumer involvement: this refinement was co-developed with Epilepsy Action, included consumer testing and engaged over 500 consumers.