Table 2 GRIPP2 Short Form Reporting Checklist

1. Aim: Report the aim of PPI in the study.

The aim of PPI (widely referred to as Consumer and Community Involvement [CCI] in Australia and used hereafter) was to co-develop the Health in Preconception, Pregnancy and Postpartum (HiPPP) Global Alliance’s CCI Framework.

1, 3

The aim of the co-developed CCI framework is to better enable opportunities for consumer involvement in health research during preconception, pregnancy and postpartum life stages, so as to establish not only what “what works” but also “what translates” into meaningful health outcomes for women and the next generation.

3

Consumers (widely accepted term in Australia for public contributors and used hereafter) would have central roles in co-designing, co-implementing and co-disseminating the strategy and framework here does not need title case, for consistency with rest of document.

2-3

2. Method: Provide a clear description of methods used for PPI in the study.

The HiPPP CCI Framework CCI team included two consumers (LJ and HiS) from established non-governmental women’s health and consumer representative organisations in Europe, and six consumers (including AE, MH, SJ, PT) recruited via a playgroup in Melbourne, Australia. The recruitment process entailed the provision of written and audio information outlining the project and telephone discussions with HB to allow consumers to ask questions before agreeing to join the team.

Consumers in Europe received training through their organisations regarding involvement as consumer experts in research activities. Consumers in Melbourne received training facilitated by HB. Training included consideration of how their unique insights/perspectives would add value to the project.

4

Consumers were recruited to attend a workshop and refine the values and pragmatic approaches described in the framework. A combination of group and individual face-to-face meetings in a variety of locations in Europe and Australia, emails and telephone communication systems were used to accommodate consumers’ differing availability.

7

Collaborations were facilitated by HB, in consultation with international CCI experts. All consumers were invited to approve the final version of the framework, and they received feedback on how their input was incorporated, and co-author this manuscript.

9–10

3. Study results: Outcomes – report the results of PPI in the study, including both positive and negative outcomes.

Consumers provided perspectives, based on reflections from their own experiences, on how the values and approaches incorporated in the framework could translate into enabling more meaningful consumer involvement opportunities during preconception, pregnancy and postpartum life stages.

This was particularly important for addressing the overall aim of the co-developed framework, which was to address common barriers that might prevent consumers from being involved in research during important maternal obesity prevention life stages and provide realistic actionable solutions for increasing consumer CCI awareness and involvement.

Table 1

Figure 1

Supplemental Table 3

4. Outcomes – comment on the extent to which PPI influenced the study overall. Describe positive and negative effects.

All consumer input was incorporated in the final version of the framework. Involving consumers with current/recent experience of HiPPP’s research focus provided an opportunity to better understand CCI values and “real world” approaches that might be relevant to potential HiPPP consumers, such as settings for reaching consumers, modes of preferred communication methods and ways that involvement could provide value to their lives beyond monetary.

Table 1

Figure 1

Supplemental Table 3

While the framework incorporates perspectives of consumers from a range of cultural backgrounds, it does not incorporate the diversity of voices represented across all communities.

10-11

5. Reflections/critical perspective: Comment critically on the study, reflecting on the things that went well and those that did not, so others can learn from this perspective.

CCI worked well in the study. However, it may not be feasible for all researchers to provide the flexibility that was offered to conduct meetings at irregular times, variety of child-friendly settings, and feedback in a range of formats. Mutually trusting researcher-consumer relationships are essential for successful CCI and these types of high-quality relationships can take time to nurture. More time and resources are needed to expand the diversity of voices included in the framework.

10-11