Co-produced lessons learned for engagement with community organisations

Area

Lessons learned¹

General principles

Co-produce research activities with community organisations and people with relevant lived experience.

Consider combining different approaches to public involvement, such as co-production and consultations.

Consider drawing on principles of knowledge mobilisation during public involvement and engagement activities.

Ensure people with relevant lived experience are actively involved in all research activities, including conceiving research ideas, and leading planning, and delivering research activities.

Take time to build trusting relationships wherever possible e.g., by providing activities such as drop-in sessions where people can have a hot drink and chat.

Aim for everyone involved in research activities to have a shared purpose and values, including through outlining expectations at the start of activities and building in time for reflective activities.

Ask people what their needs and preferences are regarding areas such as language, accessibility, terminology etc., rather than making judgements or assumptions.

Ensure any research-related information is brief, easily understandable, and illustrated with graphics, and translated/accessible formats are available for people who need them.

Ensure research teams are aware of relevant sensitivities of the communities they are working with, including factors that may contribute to mistrust of health research.

Provide research teams with relevant training, including disability awareness/accessibility training.

Ensure research team members have access to appropriate support when needed, such as peer support at reflective practice sessions and professional support via counselling services.

Planning

Co-produce involvement activities and research plans with community organisations and people with relevant lived experience.

Consider holding collaborative planning meetings if more than one community organisation is involved in the project.

Plan how to address language needs, including through translation and interpreting, and aim to offer research activities that are entirely in attendees’ own language if possible.

Plan how to address accessibility needs, including needs related to the activity timing, travel, location, and communication.

Plan for people to be accompanied by a carer/interpreter if needed.

Consider planning separate activities that are tailored specifically to the needs of certain groups.

Consider how many people to invite to group activities, aiming to have more community members than research team members if possible.

Plan a variety of ways for people to contribute to research activities, including through face-to-face activities and online activities.

Plan support for people who want to join online activities, such as by offering buddies, free Wi-Fi, and/or digital skills training.

Plan how to pay/compensate people for their time, including by covering all expenses and offering different recognition options, and ensure it is clear in advance how people will be paid/compensated.

Delivery

Co-deliver research activities with community organisations and people with relevant lived experience.

Share research opportunities through a variety of approaches, including by going to community groups and sharing information through trusted sources.

Deliver face-to-face activities in people’s familiar environments e.g., community centres, places of worship, and people’s own homes.

Dress casually when meeting with community groups.

Enable carers to contribute directly to research activities if appropriate.

Ask attendees about their preferences for how notes from discussions are recorded, including whether they want them to be visible.

Consider having an illustrator present to capture conversations visually.

Consider having interactive activities such as themed boards and ensure that all the communities involved are happy with any activities used.

Consider providing food to provide informal opportunities for conversations to continue.

Dissemination and feedback

Co-produce dissemination/feedback materials and activities with community organisations and people with relevant lived experience.

Consider holding joint dissemination events when working with more than one community organisation.

Ensure research participants are given appropriate follow up if needed, particularly if they are given new health information.

Ensure feedback about research is provided in a timely manner, even if that means sharing draft materials.

Show how people’s views and contributions have been respected and included in research.

Develop dissemination materials in a range of accessible and engaging formats, with opportunities to ask questions.

Consider organising relatively unstructured and relaxed dissemination and feedback activities to help build relationships and gain further feedback from community organisations and people with relevant lived experience.

Be realistic about what suggestions and ideas are feasible to address and which may be limited by restrictions such as funder and university procedures.