It is good practice to report who, when and how people have been involved in a systematic review, and to reflect on the impact that this had on decision making and the final outputs of the review. This section presents 2 ways to aid reporting on PPI.
The ACTIVE framework
The ACTIVE framework (Pollock et al. 2019) provides a way of describing how and when people were involved in a systematic review. The framework, mentioned in the section on levels of involvement and shown in table 4, lists a series of framework constructs that should be reported and proposes categories for classifying how people were involved.
Table 4 ACTIVE framework for describing involvement of people in a systematic review (adapted from Pollock et al. 2019)
Framework constructs | Categories | Notes |
Who is involved? | Patients, carers and their families Patients, carers and their families, and other stakeholders Other stakeholders only | The ACTIVE framework provides a way of categorising who is involved, using 3 broad categories. A written description should also be provided, giving numbers of people, and key information (for example, length of time with the health condition). |
How are people recruited? | Open, fixed Open, flexible Closed, invitation Closed, existing group Closed, purposive sampling | The ACTIVE framework provides a way of categorising the way in which people were recruited, using a series of categories based on the method of recruitment. A written description should also be provided, describing the targeted individuals or organisations, as well as where those recruited came from. |
When are people involved? | 1. Develop question 2. Plan methods 3. Write and publish protocol 4. Develop search 5. Run search 6. Select studies 7. Collect data 8. Assess risk of bias 9. Analyse data 10. Interpret findings 11. Write and publish review 12. Knowledge translation and impact | EACH stage at which people are involved should be clearly stated. The aim of involvement at each stage should be clearly stated. |
When are people involved? | Top and tail approach? | If a top and tail approach is used this should be clearly stated, again stating the level of involvement at each point at which people are involved. |
How are people involved? Approach? | One-time involvement Continuous involvement Combined involvement (that is, both one time and continuous) | The categorisation of the approach to involvement gives a simple way of summarising what happened in terms of involving people in the review. Further details about what happened at each different stage at which there is involvement should also be provided, as outlined in the row on how people are involved, level of involvement. |
How are people involved? Level of involvement? | Leading Controlling Influencing Contributing Receiving | For each stage at which people are involved, the level of involvement or control should be stated (see the ACTIVE Continuum in table 3 for definitions of levels and descriptions of tasks completed within each level). The level of involvement may vary at different stages in the review process. |
How are people involved? Format and methods? | Direct interaction No direct interaction | The categorisation of the format of involvement gives a simple way of showing the format of the involvement. It is important to also provide a description of what happened during any interaction. Details of the number and length of the interactions should also be reported. Note whether any formal research methods and processes have been used, and if so, what these were. |
Several icons have also been developed, which may be useful for ‘labelling’ the PPI within systematic reviews. These icons are shown in table 5.
Table 5 Icons relating to the ACTIVE framework for describing involvement of people in a systematic review
Framework constructs | Categories | Icon |
Who is involved? | Patients, carers and their families | |
Who is involved? | Patients, carers and their families, and other stakeholders | |
Who is involved? | Other stakeholders only | |
How are people recruited? | Open, fixed | |
How are people recruited? | Open, flexible | |
How are people recruited? | Closed, invitation | |
How are people recruited? | Closed, existing group | |
How are people recruited? | Closed, purposive sampling | |
When are people involved? | Top and tail approach? | |
How are people involved? Approach? | One-time involvement | |
How are people involved? Approach? | Continuous involvement | |
How are people involved? Approach? | Combined involvement (that is, both one time and continuous) | |
How are people involved? Approach? | Direct interaction | |
How are people involved? Format and methods? | No direct interaction | |
The GRIPP2 checklist
The GRIPP2 (Guidance for Reporting Involvement of Patients and the Public 2) checklist (Staniszewska et al. 2017) is a guideline for reporting PPI in health and social care research. It is not specific to systematic reviews, and it aims to capture reflections relating to the impact of involvement, in addition to the methods, and other components. There is a long and short-form version. The long form includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections. It is suitable for studies in which the main focus of the manuscript is PPI. The short form includes 5 items on aims, methods, results, outcomes, and critical perspective and is suitable for studies in which PPI is a secondary focus (for example, to briefly describe the PPI approach used within the manuscript describing the broader study). Although not specific to systematic reviews, the GRIPP2 checklist may provide a helpful guide for reporting the methods and impact of PPI and could be applied to a systematic review.