Collaborate has been working as learning partner to the British Science Association (BSA)’s Ideas Fund infrastructure grantees as they explore how to nurture a more equitable and healthy system for public engagement in research.

In this blog, the fourth in the series, we summarise learning and insights about how traditional research ethics processes hinder the ambition to rebalance power between communities and universities in research collaborations, and how The Ideas Fund’s place-based partnerships are experimenting and exploring alternatives.

In most conversations we’ve had about how to develop more equitable and inclusive ways for communities and researchers to collaborate, it’s never long before the ethics process is mentioned. And rarely is it mentioned in positive terms. Although there is appreciation that the intention of the process is to provide necessary and important safeguards for participants, often the practical experience of gaining ethical approval from a university for a public engagement or knowledge exchange project is an arduous process of paperwork which eventually leads to ‘permission’ to go ahead. In worst case scenarios, this can stop good work in its tracks as the process can be so time-consuming and off-putting that people simply give up.

Challenging and changing the ethics process has been a consistent theme across the four places where The Ideas Fund is operating as they seek to explore how to embed longer-term change beyond individual projects. While the ethics process may be intended to protect participants and ensure they are treated with care and respect, in reality the process as it’s typically implemented often undermines this goal in the experience of the four places.

Depending on the project and the department within the university that you’re working with, there are different ethics procedures to follow, so even successfully navigating your way through a time-consuming and inaccessible process once doesn’t necessarily leave you any better off the next time around. And the process can fundamentally undermine the ambition to rebalance power to communities which underpins The Ideas Fund and the efforts to build truly collaborative relationships that are so essential to this. Once a university is involved, the default assumption is often that ethical approval through the university’s process is a requirement of doing the work – even when communities would likely be able to do it independently (or may already be doing it) without such ‘oversight’ being required. It’s often one of the first things that a researcher and community group have to navigate together, and so can be foundational for their experience of collaboration. But too often communities experience the framing of the ethics process as stigmatising and deficit-focused, with these processes often labelling people as ‘vulnerable’ and in need of protection, rather than emphasising what they can contribute.

As many universities commit to being ‘civic universities’, which includes enabling and encouraging community participation and responding to community needs, the ethics process is one key opportunity to make those ideals a reality.

The risks of risk-aversion

There are important reasons why ethics processes need to exist. They are there to protect both researchers and communities; to protect the integrity of research and the data collected; and to ensure that research time and funds are used well. Fundamentally the process is about managing risk: but risk of what, and to whom? Current processes, particularly in the case of participatory research projects or knowledge exchange work (though arguably elsewhere too) are ill-equipped to account for key risks. The risk of harm to individuals and communities that the process can cause. And the risk of stopping good ideas and work that can deliver meaningful impact for communities becoming a reality. 

This is a challenge we see not just in the university sector but in public services too. As more and more institutions rightly seek to work alongside communities in a more equitable way, they must adjust how risk is conceived and managed so they can approach it in a way that doesn’t limit opportunities for positive outcomes or impede innovation (as we wrote about as part of our work with the Upstream Collaborative in our Reframing Risk report).

The Ideas Fund infrastructure work shows that alternatives are possible when there is purposeful intent to instil different values in the ethics process. Taking learning from independent researchers and those beyond institutional structures, and running experiments in their own work, we’re seeing exciting opportunities for more empowering approaches to ethics.

In the Highlands and Islands of Scotland, the Community Knowledge Matters Network have been exploring a rights-based approach to ethics, making it something that is not ‘done to’ communities but that empowers them. This means being explicit about what communities and individual’s rights are, what they should expect from the process and what they can ask for – including the option to say ‘no’ or ‘yes, but…’ when participating in a research project. They’ve also been building a tool for pre-engagement about the ethics process through developing a gamified participatory way for researchers and communities to explore what a good ethics process should look like in their own particular context. (Read more about their work here).

In Hull, the team have been working to develop a new asset-based empowering ethics process for Knowledge Exchange at the university (with ambitions to broaden this to wider research too). Starting from the question of “what would an empowering ethics process look like?” they have developed practical recommendations for how to do things differently at all stages of the process.

And in Northwest Northern Ireland and Oldham the opportunity to showcase and share experiences from the wealth of practical experiences that The Ideas Fund community grants programme has generated over the last two years is building the evidence for change and opening doors to encourage senior decision makers to explore something new.

Principles for an empowering ethics process

While the specific context and experience of each place is different, there is clear agreement about the direction of change that is needed. So the challenge now is to avoid the need to reinvent the wheel in every university and instead share and build on the learning, experience and tools that can drive this change. At a workshop to share learning from The Ideas Fund places’ experience of seeking to change ethics processes, the following principles for a more empowering ethics approach were highlighted which offer a useful starting point for others wanting to make change.

An empowering ethics process should be:

  • Relational: draw on the contribution of many, rather than placing the burden of managing risk on the shoulders of the researcher alone, and value the input and expertise of both communities and researchers.
  • Emergent, evolving and iterative: recognise that in participatory projects particularly, things will develop and change all the time and the work will evolve. Therefore the ethics process needs to be iterative and reviewable, not ‘fixed’ based on expectations and assumptions made prior to or at the start of the work which will inevitably evolve.  
  • Purpose-led: focused on finding the best way to support and protect participants and care for and respect communities in that specific piece of work; not just replicating ‘cookie-cutter’ processes which don’t fit the context.
  • Led by conversations and curiosity, not paperwork: support people to explore questions together, not presume answers; to enable innovation and new approaches, not just doing things ‘the way they’re always done’; and to be more accessible by reducing reliance on technical documentation.
  • Simple, concise and user friendly: respect the time and contribution of community and research stakeholders by limiting the burden as far as possible and making it straight-forward for people to understand and navigate first time around. 

These principles are important not just to make the ethics process more effective and bearable for participatory work, but also because they can provoke a wider cultural shift towards a more equitable public engagement system by changing language, behaviour and relationships.

Enabling empathy as a route to change

Efforts to change policies and processes such as this are always hard work. Whether because of entrenched interests explicitly seeking to uphold the status quo, or simply a lack of time and headspace to engage in the possibility of something different, it takes determination, resilience and creativity to make sustainable change.

But it can also be rewarding. A particular beacon of light in the work that The Ideas Fund places have done to re-imagine ethics has been how experiments have unlocked a really human side of what may be perceived as a very bureaucratic process. A key feature of the approaches has been centering empathy and creating opportunities for communities and researchers to put themselves in one another’s shoes. In Hull, they’ve been inviting people to engage with different roles and perspectives and ask “As a… what would I want and need from an ethics process?”. And the Highland and Islands’ participatory game asks communities first to design an ethics approach for a hypothetical project and then apply this thinking to their own scenario. Both these approaches have shown that when given the opportunity, researchers and communities are able to see the needs and challenges of one another’s positions, and understand at a sophisticated level what an ethics process really needs to grapple with in terms of questions of power, safeguarding and research integrity.

Our key takeaway is that we need to approach conversations about how to deliver community and researcher collaborations in ethical ways from a standpoint of enabling human to human connection, understanding and empathy. If we do this, we can trust those involved to come up with a robust approach to ethics which protects everyone involved, while still enabling space for greater equity and innovation. 

This blog is part four of a series. You can read part one, two and three here:

Part one: Beyond project funding: how can funders nurture healthy systems?

Part two: Putting learning and collaboration at the heart of local systems change funding

Part three: Nurturing a healthy system: Following where the energy goes