Diary of an Infrastructure Network: The First Six Months
Written by Lauren Pyott (Network Coordinator, Science Ceilidh)
September 2023
Introduction
Community Knowledge Matters is a new network bringing together people interested in community-led research shaping practice & policy change in mental health and wellbeing in the Highlands & Islands and beyond.
The network is building collective voice and capacity through a programme of activities – including network events, collation of resources and funded training opportunities – working together to support more community knowledge represented at a systemic level.
Our steering group comprises those working in grassroots organisations, community development, policy, third sector organisations, public health, higher education institutions and research. We will continue to consider what other voices should be in the steering group, to reflect the diversity and grassroots nature of the network. As the Development Coordinator for the The Ideas Fund projects across the Highlands & Islands, from which this network initially emerged, Science Ceilidh are coordinating and driving forward the network.
The network holds regular ‘community of practice’ meetings, offering networking opportunities, updates on programme activities, as well as peer learning and group reflection space. There are also three working groups, looking at ethics, public health and social care, and a co-priority survey respectively.
Developing the Network
Being a value driven project, we were keen to collectively agree on a set of beliefs and values that would shape the programme, communicate our motivations and hold us accountable. These beliefs and values were workshopped with the steering group and wider network members in our community of practice. They do however, remain a work in progress as we continue to explore language that is most accessible to everyone.
Our Values:
equity, inclusivity, collaboration, respect, integrity.
Our Beliefs:
We need diverse and integrated forms of knowledge to make sense of the world.
Everyone’s expertise matters.
Research is never ‘neutral’ – there are always underlying values and ethical & political tensions to navigate.
We are better working together and sharing resources to effect structural change.
Researchers are not separate from communities.
This realisation prompted us to unsettle the assumption that all words around research on mental health will mean the same thing to everyone. The idea of collaboratively working on a living glossary of common terms was developed as a way to tease out some of these tensions and shed light on the diversity of knowledge and perspectives around these issues. This was not designed to be a definitive list or ‘dictionary’ that would bring us all onto the ‘same page’, but would rather help us co-write an evolving library of meanings, highlighting and finding meaning in the differences of interpretations or perspectives. We will be developing this living glossary as a focal point and exercise-in-dialogue throughout our upcoming communities of practice, focusing on those words which we collectively identify as being the most contentious or diverse in interpretation.
Finally, our conversations around language prompted us to think carefully about how we should present the network to the wider world – what the network should be called, and how it should appear. We workshopped different options over a number of months through our communities of practice, and eventually came up with ‘Community Knowledge Matters: A Highlands & Islands Network for Community Led Research’.
Learning Reflections
How can we find a language that feels meaningful and accessible to all whilst conveying the complexity of our network and programme of work?
How can we ensure that people feel heard and held in the process of developing the network when we know that our partners have limited capacity, whilst continuing to drive it forward?
What can the process of examining our different perspectives teach us about how communities and researchers can work together more equitably?
Community Engagement
The Public Health & Social Care working group, comprising individuals with lived experience, members of grassroots community organisations and those working in the third and public sectors, has focussed on how we can engage with communities in a respectful, meaningful and effective way. What forms of evidence are currently being valued and listened to by policy & decision-makers, and which ones should be? What are the barriers to change within the sector, and mechanisms that we can employ? What other theories of systems change can we learn from?
We started with an acknowledgment of consultation fatigue and discussions about how we could avoid this through our own co-priority process. This prompted a piece of work on ‘consultation mapping: a literature review of sorts to establish what’s already been asked, how it’s been asked, what we can learn from it. We also discussed the parallel issue of participation fatigue, acknowledging that community engagement, though well-intentioned, can often be interpreted as though the burden of responsibility for ‘fixing’ society-wide issues is merely being placed on the communities themselves. But where does this leave the belief that communities should be involved in helping shape the research questions and policies that affect them? And what is the role of a network such as ours in bridging that gap?
One response to this is our attempt to avoid strict binaries between communities and professionals, the latter including researchers, people working in public or statutory bodies, or policy/decision makers. Everyone in society can be viewed as ‘researchers’ in their own right and those working in institutional capacities should also be viewed as members of their own communities – many have lived experience of their own and should be invited to bring their ‘whole self’ to the issues they’re working on. This may be even more the case in smaller, more rural communities across the Highlands & Islands where individuals tend to be more interwoven into the everyday lives of those around them, often performing multiple roles (or even jobs) at the same time.
Screenshot from the ‘community check-in’ mentimeter: the numbers in the circle showing the weighted average of votes, and the waves showing the distribution of values (ie. ‘don’t identify’ to ‘strongly identify’).
To reflect this ‘whole self’ approach, we initiated a ‘community check-in’ at the start of each community of practice, inviting participants to indicate what different ‘hats’ they’re coming into the space with each session on a sliding scale, recognising that someone might be there in a professional capacity on some level, but also there as a person with lived experience and an interest in research on another. This, we hope, can go some way to exploring the different perspectives that each one person can bring to the table and complicating the ‘us’ and ‘them’ approach to community-researcher partnerships that can sometimes emerge, whilst still allowing us to explore the power dynamics that exist more structurally.
Reflective Learning Questions
How to avoid consultation fatigue with our own co-priority process and network activities when there is a long history of communities being asked questions but feeling like they haven’t been listened to?
How to avoid participation fatigue in the context of multiple crises and when material, mental and emotional resources for community members are so low?
How to avoid unhelpful binaries between communities and ‘professionals’, making sure not to ‘pigeon-hole’ people, whilst also taking into account the power dynamics involved?
Participatory Ethics
The Ethics Working Group, made up of individuals with lived experience, members of third sector organisations, researchers and others working in decision-making capacities, started with an acknowledgement that traditional ethics processes, especially within a university context, don’t always best serve community needs and interests.
Our first activity, therefore, was thinking about what a utopian ethics process might look like, one not necessarily constrained by the limitations of institutional requirements. What are the existing barriers/opportunities for communities who want to access an ethics process outside of a university context? And to what extent are communities able to help shape an ethics process that works for them?
Given our previous work looking at consultation and participation fatigue, one of the most important questions driving this exercise was: how do we respond sensitively when community groups (want to) say no to engaging with research? This prompted us to explore what it might look like to think about ethics from a rights based perspective. Could we develop an ethics process that enables rather than informs people? How could we encourage community groups to develop their own terms of engagement with research? Could we trial this as a pre-engagement stage of community engagement or co-production?
With this in mind, we started thinking about what a participatory ethics process might look like, one which brings the spirit of co-production into not just the research itself but also into how the research should be conducted.
In collaboration with some of our partners in Shetland, the community organisations OPEN, Who Cares and Ability Shetland, we developed a trial toolkit which would allow us to explore ‘participatory ethics’ from a rights based perspective. This was presented in the form of a game which would allow participants to design their own imaginary research process, putting themselves in the shoes of the researcher, making decisions about what ethical approaches would be most appropriate in various contexts. They were then encouraged to reflect on whether they would themselves be comfortable with these modes of engagement, before discussing how this might change in the context of research about mental health and wellbeing.
As intended, the game prompted reflective questions about how they would have felt more comfortable being engaged with previously through research, and how they might like to be involved in research processes in the future. Through the process of putting the young people in the shoes of researchers, the game also succeeded in breaking down the binaries between ‘communities’ and ‘professionals’ with many young people finding great empathy with the constraints often placed on researchers.
The toolkit is being further developed with the young people who participated in the initial workshops to see how this could be used more widely by community groups and researchers alike, to empower them to engage more with designing an ethics process that feels respectful, appropriate and meaningful. Their thoughts about this may feed into our wider programme of co-evidence writing in the next phase of the network programme.
Reflections
What would a utopian ethics process look like?
How can we avoid making assumptions about how community members would like to be engaged with through research whilst also ensuring they are safeguarded against potential harm?
What would a participatory ethics process look like?
How can we explore a rights based approach to ethics that enables rather simply informs communities.
Co-Priority Setting
Process
The co-priority setting phase of the programme was initially designed to be our first activity, so that the thoughts and needs of communities across the Highlands & Islands could help inform the structure of our remaining network activities. The idea was to work with a number of communities across the region, including different geographical communities and communities of identity / experience, to ask them what their priorities around mental health in the Highlands were, as well as how they thought communities and researchers could work better together to support this.
However, bearing in mind the sensitivities around consultation fatigue, as well as a desire to find ways for communities to help shape the ethics processes of research projects, we realised that this could be more meaningful once our consultation mapping and participatory ethics activities had been further developed. We also realised that many community organisations did not have the required capacity to co-deliver the kinds of co-priority setting activities we had in mind, and that co-developing an online survey with and for communities across the Highlands & Islands would be more appropriate and accessible for many of the rural communities we’re working with.
In the spirit of the values of the network, we invited community members to join a working group which will be involved in shaping the survey questions, helping design the ethics process, and then co-analysing the data afterwards. The working group will be co-facilitated by Professor Sarah-Anne Munoz (Division for Rural Health and Wellbeing, University of the Highlands and Islands, UHI) and the Community Knowledge Matters (CKM) network coordinators, and will also include a member of the network steering group, and one of the community partners who has been co-developing our participatory ethics toolkit.
The results of the survey will help shape the network's direction in the provision of tailored support and will be shared more widely in order to inform future research directions, as well as to help influence policy and decision-making around mental wellbeing. The results will also help inform the writing of a new collaborative international position paper on rural mental health research with colleagues from Australia, USA, Ireland, England, South Africa and Sweden. This international group is convened by Prof. Russell Roberts from Equally Well Australia and Charles Sturt University. Each country participating is undertaking a collaborative, community-engaged, approach to data collection, analysis and writing.
Reflective Learning Questions
How can community partners help shape the design of a co-priority setting process with the limited capacity they have?
What would be most valuable in a co-priority setting survey for our network members and community partners? What themes and questions are important to them?
How to Get Involved
Join our network!
To join our network and sign up to the mailing list to receive invites to our network activities and events, please fill out this short form here.
Come along to a community of practice
We host regular online communities of practice sessions, offering people a chance to network and make connections across the sector, find out more about what we're doing and how you can get involved, share peer learning, insights or common challenges, and discuss whatever topics or issues feel important at the time. All are welcome!
You can find the next community of practice date here. Sign up to our mailing list to receive an invitation.
Get Involved
If you would like to be involved in helping shape any of the activities above, either a community partner or as a member of one of our working groups, please get in touch with Network Coordinator Lauren Pyott lauren@scienceceilidh.com