Topic refinement for Cochrane Reviews- working with partners to reach stakeholders

Hill, RA ORCID: 0000-0002-2801-0505 and Crowe, Sally
(2019) Topic refinement for Cochrane Reviews- working with partners to reach stakeholders. In: Cochrane UK & Cochrane Ireland Symposium 2019, 2019-03-21 - 2019-03-22, Oxford, UK.

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Topic refinement for Cochrane Reviews – working with partners to reach stakeholders: a case study Background This presentation describes a case study in Epilepsy and Movement Disorders review topic refinement - a process combining prioritisation of topics and the outcomes used to explore those topics. Agreeing topics for and relative importance of systematic reviews is an important part of the review production cycle. Difficult decisions sometimes need to be made as capacity in limited and there will competing ideas for reviews. Stakeholder engagement in topic refinement is just one aspect of the review process that needs careful thought and planning, not only in terms of methods, but also consideration of scope of the refinement and resources to be applied We will describe how we conducted stakeholder engagement that helped to refine, select and understand the importance of a selection of systematic reviews in epilepsy and Parkinson’s Disease. This topic refinement was part of a programme of work funded by NIHR (16/114/26). What we did When we refer to stakeholders in this project, we mean people with direct experience of the health conditions, such as people with epilepsy or Parkinson’s Disease, carers and health professionals. We engaged with stakeholders to seek their preferences for Cochrane systematic review topics relating to interventions and care for people with Epilepsy or Parkinson’s Disease. We used a shortlist of review topics developed by the review group editorial base in consultation with clinical experts. There were 26 shortlisted topics on epilepsy and 11 for Parkinson’s Disease. We used 2 separate web-based questionnaires for the topic refinement. People were asked to choose their top 5 review topics from the shortlists, rank these in order of priority and, finally, to comment on the reasons for their choices using free text boxes. A distinct feature of our approach was that the same questionnaire also invited people to suggest additional topics, rank these and share reasons for their suggestions. How we did it We carefully considered our approach to topic refinement, referring to approaches described by Cochrane Priority Setting Methods Group, James Lind Alliance (JLA), NICE and the REPRISE checklist and available digital technologies. We also developed partnerships with 2 key stakeholder groups representing people with Epilepsy or Parkinson’s Disease (Epilepsy Action, Parkinson’s UK). As a team, we agreed to focus our approach on the use of web-based questionnaires, promoted by our 2 partner groups and targeted social media activity. We focussed primarily on people living with either epilepsy or Parkinson’s, carers and family members, but health and social care professionals could also complete the survey. We used email from our stakeholder partners to their membership and social media to publicise the surveys and encourage participation. We also used a variety of visual media to catch people’s attention and direct them to the surveys. We ensured that the survey had links to infographics and materials (Cochrane and others) that explained the context for the survey was to informed priorities for Cochrane Systematic Reviews. Ethical approval was obtained from the University of Liverpool (Health and Life Sciences Research Ethics Committee 3087). What has been the output/impact? Overall response rates were excellent, and comparable numbers achieved for established organisations focusing on priorities (such as JLA). For the Epilepsy survey there were 569 survey participants and for the Parkinson’s survey, 470 people took part. For epilepsy ,336 people answered the question ‘Tell us more about why these topics are a priority for more research using a systematic review’. Responses ranged from descriptions of adverse effects of treatments, comments on the balance of control of conditions and adverse effects and uncertainties on effectiveness in particular groups. In the Parkinson’s survey, 272 people responded yielding a similarly rich source of data about choices. These are being analysed. What can others learn? • Options available to conduct topic refinement (prioritisation) at a good quality and scale within limited resources. • Practical advice on how to conduct successful online engagement for priority setting reviews, from a case study with people with Epilepsy or Parkinson’s Disease and their carers and family members. • Ways this exercise is contributing to Review Group discussions about topic choices and key areas to explore within their reviews.

Item Type: Conference or Workshop Item (Unspecified)
Depositing User: Symplectic Admin
Date Deposited: 26 Mar 2019 08:27
Last Modified: 09 Jan 2021 04:08