Development and application of the ACTIVE framework to describe stakeholder involvement in systematic reviews

Session: 

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

Date: 

Sunday 16 September 2018 - 17:00 to 17:20

Location: 

Carrick 1

All authors in correct order:

Pollock A1, Campbell P1, Struthers C2, Synnot A3, Nunn J3, Hill S3, Morris J4, Goodare H5, Watts C6, Morley R7
1 Glasgow Caledonian University, United Kingdom
2 University of Oxford, United Kingdom
3 La Trobe University, Australia
4 University of Dundee, United Kingdom
5 Retired, United Kingdom
6 Cochrane Learning and Support, United Kingdom
7 Cochrane Consumer Network, United Kingdom
Presenting author and contact person

Presenting author:

Alex Pollock

Contact person:

Alex Pollock
Abstract text
Background:
Involvement of patients, health professionals, the public and others (stakeholders) is beneficial to the quality, relevance and impact of research and may enhance the usefulness and uptake of systematic reviews. However, there is a lack of evidence and resources to guide systematic review authors in how they can actively involve stakeholders in their reviews.

Objectives:
To develop a framework (the 'ACTIVE framework') to describe how stakeholders are involved in systematic reviews and to apply this framework to describe stakeholder involvement in a series of systematic reviews.

Methods:
We systematically extracted and tabulated data relating to 32 systematic reviews (previously identified in a systematic scoping review) within which methods of stakeholder involvement had been described. Data were categorised against pre-defined constructs, including: who was involved, how people were recruited, what happened, when there was involvement and how much involvement. A draft ACTIVE framework was refined after presentation at a conference workshop.

Results:
The ACTIVE framework defined whether patients, carers and/or families, or other stakeholders were involved. The method of recruitment was defined as either open or closed, and the approach to involvement as either one-time, continuous or combined. The format of involvement was defined as either direct or indirect interaction. The stage of involvement was defined using the Cochrane Ecosystem stages of a review, and the data suggested that a 'top and tail' approach was common. The level of involvement of stakeholders was defined according to the roles and activities of stakeholders in the review process, and described as a hierarchy of involvement. Data from the 32 systematic reviews were mapped to the framework constructs and brought together within a summary table.

Conclusions:
The ACTIVE framework provides a structure that summarises key components of stakeholder involvement within a systematic review. We have used this ACTIVE framework to summarise how stakeholders have been involved in a range of example systematic reviews. This framework may support the decision-making of systematic review authors planning how to involve stakeholders in future reviews.

Patient or healthcare consumer involvement:
Three stakeholder representatives were involved as co-applicants and authors.

Relevance to patients and consumers: 

Our research is specifically aimed at helping achieve meaningful involvement of patients, consumers and others in systematic reviews. This framework development, which is part of a wider project, considers how we can we can best present and report the ways in which patients and consumers are involved in a systematic review. This framework has been used within a free online learning resource developed by Cochrane Training: http://training.cochrane.org/involving-people. ‘Involving People’ is a resource for systematic review editors and authors to support them in getting patients, consumers and others involved in the production of reviews.