Home > Systematic reviews > Describing and reporting PPI within a systematic review

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 constructsCategoriesNotes
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 constructsCategoriesIcon
Who is involved?Patients, carers and their familiesIcon to illustrate that patients, carer and their families were involved - Description: A purple stick figure standing in a circle
Who is involved?Patients, carers and their families, and other stakeholdersIcon to illustrate that patients, carer and their families plus other stakeholders were involved - Description: A purple stick figure standing in a circle, and a black stick figure making up part of a globe
Who is involved?Other stakeholders onlyIcon to illustrate that only other stakeholders were involved - Description: A black stick figure making up part of a globe
How are people recruited?Open, fixedIcon to illustrate that people were recruited using an open fixed strategy - Description: An arrow pointing into an open door, next to the word 'fixed'
How are people recruited?Open, flexibleIcon to illustrate that people were recruited using an open flexible strategy - Description: An arrow pointing into an open door, next to the word 'flexible'
How are people recruited?Closed, invitationIcon to illustrate that people were recruited using an closed invitation strategy - Description: A closed padlock next to the word 'invite'
How are people recruited?Closed, existing groupIcon to illustrate that people were recruited using an closed existing group strategy - Description: A closed padlock next to the word 'group'
How are people recruited?Closed, purposive samplingIcon to illustrate that people were recruited using an closed purposive sampling strategy - Description: A closed padlock next to the word 'sample'
When are people involved?Top and tail approach?Icon to illustrate that people were involved using a top and tail approach - Description: Number 1 in a grey circle with a wiggly line leading to a Number 12 in a grey circle
How are people involved? Approach?One-time involvementIcon to illustrate that people were involved using a one-time involvement approach A speech bubble containing the text 'times 1'
How are people involved? Approach?Continuous involvementIcon to illustrate that people were involved using a continuous involvement approach - Description: Two grey semi-circular arrows, together forming a circle
How are people involved? Approach?Combined involvement (that is, both one time and continuous)Icon to illustrate that people were involved using a combined involvement approach - Description: Two grey overlapping squares
How are people involved? Approach?Direct interactionIcon to illustrate that there was direct interaction between the people involved - Description: Two black overlapping speech bubbles
How are people involved? Format and methods?No direct interactionIcon to illustrate that there was no direct interaction between the people involved - Description: Outline of a computer screen

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.