Abstract
BackgroundThis paper describes the structured methods used to involve patients, carers and health professionals in an update of a Cochrane systematic review relating to physiotherapy after stroke and explores the perceived impact of involvement.MethodsWe sought funding and ethical approval for our user involvement. We recruited a stakeholder group comprising stroke survivors, carers, physiotherapists and educators and held three pre-planned meetings during the course of updating a Cochrane systematic review. Within these meetings, we used formal group consensus methods, based on nominal group techniques, to reach consensus decisions on key issues relating to the structure and methods of the review.ResultsThe stakeholder group comprised 13 people, including stroke survivors, carers and physiotherapists with a range of different experience, and either 12 or 13 participated in each meeting. At meeting 1, there was consensus that methods of categorising interventions that were used in the original Cochrane review were no longer appropriate or clinically relevant (11/13 participants disagreed or strongly disagreed with previous categories) and that international trials (which had not fitted into the original method of categorisation) ought to be included within the review (12/12 participants agreed or strongly agreed these should be included). At meeting 2, the group members reached consensus over 27 clearly defined treatment components, which were to be used to categorise interventions within the review (12/12 agreed or strongly agreed), and at meeting 3, they agreed on the key messages emerging from the completed review. All participants strongly agreed that the views of the group impacted on the review update, that the review benefited from the involvement of the stakeholder group, and that they believed other Cochrane reviews would benefit from the involvement of similar stakeholder groups.ConclusionsWe involved a stakeholder group in the update of a Cochrane systematic review, using clearly described structured methods to reach consensus decisions. The involvement of stakeholders impacted substantially on the review, with the inclusion of international studies, and changes to classification of treatments, comparisons and subgroup comparisons explored within the meta-analysis. We argue that the structured approach which we adopted has implications for other systematic reviews.Electronic supplementary materialThe online version of this article (doi:10.1186/s13643-015-0023-5) contains supplementary material, which is available to authorized users.
Highlights
This paper describes the structured methods used to involve patients, carers and health professionals in an update of a Cochrane systematic review relating to physiotherapy after stroke and explores the perceived impact of involvement
This paper describes the structured methods of involvement of this stakeholder group in the updated Cochrane review and explores the perceived impact of involvement
Consensus methods We used formal group consensus methods to reach consensus decisions within the stakeholder group meetings, as such methods are recognised to be advantageous when subjective judgements need to be organised [21]. These consensus methods were based on nominal group techniques, as this method enables the pooling of decisions and judgements from a group of informed experts, leading to votes on a range of options until group consensus is reached [20,22]
Summary
This paper describes the structured methods used to involve patients, carers and health professionals in an update of a Cochrane systematic review relating to physiotherapy after stroke and explores the perceived impact of involvement. Despite widespread acceptance of these arguments, which are driving national strategies to ensure involvement of people affected by health conditions in all research activities [6], there remains a lack of high-quality evidence demonstrating the impact of involvement on research activity and uptake of evidence [3]. This lack of evidence has contributed to the considerable inconsistencies in the extent of user involvement within Cochrane reviews, despite over 20 years of consumer involvement within the Cochrane Collaboration [7]. This review found that the most commonly used approaches are consultation with a group of people at a one-off workshop or at key stages in the review process, or involvement of individual people as members of a review team, other approaches such as email consultation and using a Delphi process have been used [8]
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