Section 1: Developing an advisory group

Key Insights

Assembling the group

• The advisory/steering group should include a diversity of perspectives and experiences – especially those who might not usually be involved in decision-making, and who may have shared experiences or characteristics with those likely to be involved in (or impacted by) the research.

• Consider carefully how you frame expertise, experiences and conflicts of interest – everyone's perspectives will be drawing on different values and experiences, and it is helpful to support people to acknowledge and recognise the different expertise everyone brings to the table. Look out for where power dynamics may arise in relation to different types of expertise and highlight that all kinds of expertise (e.g., lived experience, local knowledge, practical insight and professional experience) are accorded authority and value. 

• When assembling the group ask from the very beginning for details of how the group meetings could be made more accessible and inclusive: offer diverse options for communication preferences; develop respectful ways of offering support to those that may be at risk of being excluded from discussion; and ensure online and in-person meeting spaces and timing respect individual’s commitments and needs.

Facilitating productive group meetings

• Advisory meetings must be facilitated carefully otherwise issues around power differentials can exclude or stifle some voices and perspectives: this may involve establishing ground rules/expectations about how to contribute and listen, and finding respectful ways to commuicate and negotiate when constrasting perspectives and ideas arise.

• Inclusive and accessible communicative practices should be used to ensure each person can explain their perspective and contribute to decision-making: Principles of Universal Design should inform the design of the communication processes, a basic introduction to accessible writing/text, spoken communication, writing for the web. It is helpful to check with each person prior to meetings as to how they prefer to communicate and consult advocacy pages relevant to the topic of focus to seek guidance on inclusive communication and respectful language. 

• Circulate any pre-reading a week in advance and check if there are any other formats that may assist with their processing of text. For example, if they have a screen reader/read aloud software ensure the documents work with this by using the Microsoft Accessibility Checker.  It can be useful to send the document as Word documents, rather than pdfs, so they can expand the text / put elements in bold to assist processing.

Wale and colleagues (2021) identify diverse mechanisms for promoting Community Advisory Group involvement and partnership, they highlight the value of including the following elements:

▫    “Independent chair who kept to time and structured meetings...

▫    Flexibility in the levels and approaches of involvement…

▫    Well-prepared and informative presentations from Project Team...

▫    Value seen to be placed on Community Advisory Group contributions.

▫    Activities register to record activities, enable identification of outcomes of involvement

▫    Built-in reward mechanisms such honoraria, enabling workshop development, posters at conferences, presentations etc.”(Wale et al., 2021, p.7)

Involvement in design and decision-making

• Advice and insight from the group should inform as much of the research as possible: including research question development, method selection, consent and information materials, activity design, dissemination and knowledge exchange processes, and ideally the group should be the final decision makers.

Researcher Insight:

‘We have panels of young people who, for example, look at all our research instruments, our participant information sheets that are going out, and our consent forms; they look at the language and the content and advise on whether certain questions might be more sensitive than others’ (Researcher 2).

This researcher also discussed how their advisory group’s feedback changed and informed their design of online surveys for children and young people:

‘I had all these ideas about ‘Let's make them [the online surveys] colourful and bright for children’. No, that's not what they wanted. They wanted a very simple screen, with no change in the questions, so not changing from a grid to a horizontal question…No grids shifting between different types of question, just the same, just something consistent all the way down... If I hadn't asked the children, it would have been all over the place and very difficult for anybody with ADHD or dyslexia’. (Researcher 2)

Induction, training and support for the advisory group

Training and support should be offered to advisory group members to ensure they feel able to articulate their perspectives in a compelling and informed fashion. Give opportunities for members to identify their own training needs as well as offering support to upskill in areas they are interested in or specific areas of the research they ae not familiar with.

Recommendations from the literature:

- Provide training in ethical research processes and navigating ethical dilemma:

“Our data suggest that Community Advisory Boards [CAB] members sometimes had insufficient ethics guidance...Future research in low- and middle-income countries should consider incorporating pre-existing ethics documents, including ethics guidelines, statements of shared principles, and other contextualized ethics documents, into CAB member training so that CABs are better prepared to address ethical concerns.” (Zhao et al., 2019, p.7)

- Offer training opportunities that could support members’ professional development:

“Providing professional development to Youth Advisory Board [YAB] members can take a variety of forms. Across our YABs, popular topics include resume [CV] creation, including documenting research experiences. Other requested topics include networking skills, professional interviews, and handling difficult conversations” (Moreno, Jolliff & Kerr, 2021, p.193)

Responding to the group’s insight on engagement strategies

It is helpful to use insights from the group to guide and inform a strategy of knowledge exchange and engagement to take place throughout the research: knowledge exchange should not be considered as a ‘bolt-on’ activity at the end, but rather an ongoing process of reciprocal learning where different methodologies of engagement are co-developed with the advisory group.

Researcher Insight:
‘When you have somebody there, who's going to see something from a different point of view, and who has different points of reference, you're going to get a better understanding of how to conduct your research. And therefore your research, I think, is more likely to be successful and meaningful and so on, and might be helpful in addressing things like research dropout, for example, if you've got somebody, you've got an advocate, someone who ultimately participants recognise as trustworthy’. (Researcher 1)

 Key  Literature

 Literature

• Adams, A., Nnawulezi, N., & Vandenberg, L. (2015). “Expectations to change” (E2C): A participatory method for facilitating stakeholder engagement with evaluation findings American Journal of Evaluation, 36(2), 243–255. https://doi.org/10.1177/1098214014553787
• Jumarali, S. N., Nnawulezi, N., Royson, S., Lippy, C., Rivera, A. N., & Toopet, T. (2021). Participatory Research Engagement of Vulnerable Populations: Employing Survivor-Centered, Trauma-Informed Approaches. Journal of Participatory Research Methods, 2(2), 24414. https://doi.org/10.35844/001c.24414
• Le Cunff, A.-L., Ellis Logan, P., Ford, R., Martis, B.-L., Mousset, I., Sekibo, J., Dommett, E., & Giampietro, V. (2023). Co-Design for Participatory Neurodiversity Research: Collaborating With a Community Advisory Board to Design a Research Study. Journal of Participatory Research Methods, 4(1). https://doi.org/10.35844/001c.66184
• Moreno, M. A., Jolliff, A., & Kerr, B. (2021). Youth advisory boards: perspectives and processes. Journal of Adolescent Health, 69(2), 192-194. https://doi.org/10.1016/j.jadohealth.2021.05.001
• Silva, C. (2022). Programming and Researching With Youth in Cultural Institutions – a Brief Reflection on a Cross-Institutional Youth Advisory Board. Journal of Participatory Research Methods, 3(3, Youth-themed Special Issue). https://doi.org/10.35844/001c.38686
• Wale, J.L., Di Pietro, L., Renton, H. et al. (2021) Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective. Res Involv Engagem 7, 84. https://doi.org/10.1186/s40900-021-00326-6
• Zhao, Y., Fitzpatrick, T., Wan, B. et al. (2019) Forming and implementing community advisory boards in low- and middle-income countries: a scoping review. BMC Med Ethics 20, 73. https://doi.org/10.1186/s12910-019-0409-3

Key Links

 Online resources

• Cancer Research Patient Advisory Panel: This has very useful templates for advisory group roles, expectations and a template for establishing ground rules.
• INVOLVE: National Standards for Public involvement
• Joseph Rowntree Foundation Project Advisory Groups: this has a helpful document outlining the different responsibilities of members and organisers and offers helpful guidelines.  
• Office for the Advocate for children and young people: A Guide to Establishing a Children and Young People’s Advisory Group: there is a very useful summary of the guidelines developed by young people on Page 19 of the report.