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Table 1 HiPPP Consumer and Community Involvement Framework Co-Development Process

From: Global Health in Preconception, Pregnancy and Postpartum Alliance: development of an international consumer and community involvement framework

Phases Values Implementation
Phase 1 Inclusive  
CCI Workshop, with 13 international experts in the fields of women’s preconception, pregnancy and postpartum health, two consumers and six early career researchers representing five continents, to propose and discuss values and approaches for the framework development. HiPPP:
• Works with consumers to understand what is needed to ensure that consumer involvement opportunities are inclusive for women with lived experience of weight/healthy lifestyle issues, regardless of their background, education, location, age, culture and language. This includes holding meetings in appropriate venues (i.e., child friendly), providing interpreters, welcoming support people (i.e., partner) and adapting processes for cultural relevance.
• Has mechanisms and processes to ensure that consumers are compensated for their involvement. This may include reimbursement of transport and childcare costs.
• Produces Plain english summaries of research available for consumers and local communities.
HiPPP implements pragmatic approaches for facilitating meaningful CCI in preconception, pregnancy and postpartum for improving healthy lifestyle and reducing maternal obesity; that extend to:
Reaching consumers
HiPPP reaches settings and uses methods for promoting CCI opportunities for women in preconception, pregnancy and postpartum as they don’t typically view themselves as patients:
• Family doctor/general practitioner
• Hospitals
• Specialist care (fertility clinics; endocrinologists)
• Waiting rooms of healthcare providers
• Workplace
• Community centres
• Targeted podcasts
• Targeted mobile apps
• Retail outlets (e.g., charity shops)
• CCI registration database
• Pharmacy
• Playgroups
• Library (including toy library)
• Community groups and centres (including cultural/language group)
• Support services/programs for young mothers
• Parent rooms in shopping centres, workplaces
Phase 2 Flexible
Review of peer-reviewed and grey literature to identify existing CCI frameworks and resources. HiPPP:
• Partners with consumers and communities to identify different ways they can be involved in research projects at different stages of the research cycle, that take into account flexible options required to facilitate meaningful involvement during preconception, pregnancy and postpartum.
• Makes decisions on locations, frequency, timing of meetings with consumers and local communities. This includes making sure that opportunities for involvement are held at times and places that best suit women/relevant consumers at different stages of preconception, pregnancy and postpartum.
• Uses a variety of methods to involve consumers and local communities targeted at specific stages of preconception, pregnancy and postpartum or as a continuum. This includes a CCI section on HiPPP webpages, social media platforms (e.g. Facebook, Whatsapp) and promotion through poster/leaflet campaigns at playgroups, workforces and hospitals.
Phase 3
Building on findings from Phases 1 and 2, collaboration with consumers (i.e., members of the public with lived experience of weight/lifestyle issues in preconception, pregnancy and postpartum) and international CCI experts to workshop and refine the framework.
Transparent
HiPPP:
• Presents opportunities to be involved in research projects in a clear, accessible format and will include information about expectations for the role, expected time commitment, information about reimbursement and contact details for the lead researcher.
• Advertises opportunities for involvement in a range of places, including: community centres, hospitals, support groups, playgroups and the workforce.
• Is clear about who needs to be recruited and why people have been chosen to be involved (e.g. relevant experience) when opportunities for involvement are advertised.
Facilitating involvement
HiPPP facilitates opportunities for meaningful involvement that account for consumers’ limited availability due to caregiving responsibilities and other barriers to participation (i.e., language; location; disability; culture) and recognises the value of the expertise that they contribute; approaches include:
• Online, telephone and face-to-face meetings.
• Reimbursement for travel/ childcare costs.
• Welcoming a support friend/relative at meetings.
• Welcoming/providing an interpreter.
• Meeting in child-friendly venues (i.e., play groups; child activities where parents are sitting around waiting).
• Providing afternoon tea or equivalent.
• Providing preconception starter kit with evidence-based advice and source of information clearly identified and referenced (other online and advice not always accurate/consistent).
• Offering vouchers for education sessions (e.g., consultation with pre-pregnancy dietitian)/information sessions.
• Invitations to co-author and co-present research and other opportunities that will help boost professional development/CV.
• Providing certificates to recognise training received or involvement.
Equitable
HiPPP:
• Views researcher-consumer relationships based on mutual trust, integrity and respect as central to implementing meaningful CCI.
• Recognises the value that both the researcher and consumer contribute toward research.
• Involves consumers in designing and agreeing on CCI strategies.
• Ensures that researchers working with consumers have the skills to facilitate appropriate group processes, such as fostering a culture that views researchers and consumers as equal partners, creates opportunities for speaking and listening and welcomes diverse viewpoints.
• Partners with consumers to identify ways to publicly acknowledge the value of their contribution, such as co-authoring publications and co-presenting at conferences.
• Recognises that both consumers and researchers may require training and support for implementing CCI.
• Avoids making assumptions about consumers knowledge and capacity to learn, and partners with them to understand their preferences around the use of medical terminology.
Effective communication
HiPPP implements communication approaches that are inclusive and accessible and the type of content that provides value to those involved, including:
• Using basic English as a general rule but asking consumers what they would like (don’t make assumptions).
• Providing options for low literacy levels.
• Through Maternal Child Health Nurse information packs.
• As short brief messages.
• Through social media posts and videos.
• Providing health updates and tips.
• Providing informative talks to families (mothers and fathers).
Adaptable
HiPPP:
• Evaluates researcher and consumer experiences and involvement at set intervals throughout the project and adapts processes as the needs of consumers, researchers and project change.
• Nurtures a culture where consumers feel comfortable providing feedback about their experiences and discuss altering their roles at any stage.
• Ensures that consumers have a clear idea of how their involvement contributes toward the research and its outcomes.
• Develops methods to evaluate the impact of CCI on improving healthy lifestyle of women in preconception, pregnancy and postpartum.
• Provides regular feedback to consumers and communities on their involvement in projects and in turn receives feedback on consumers’ reflections on experiences of involvement, making changes to involvement approaches where necessary.
  1. CCI=Consumer and Community Involvement; HiPPP=Health in Preconception, Pregnancy and Postpartum