How Do You Translate Lived Experience into Recommendations for Policy?

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Sarah O’Meara

The importance of including evidence from individuals’ lived experiences when shaping policy ideas is well understood by academics. What can be harder for researchers to navigate are the huge practical challenges posed by this approach.

Translating and incorporating the experiences of individuals into broader plans for society isn’t straightforward. Doing this process well and meaningfully requires a significant amount of time, resources and often a willingness to conduct research in new and challenging ways.

During our recent event on Translating Lived Experience to Policy, we dove into the processes and values behind translating qualitative research and lived experience evidence into policy development, and how you can influence decision-makers with this kind of evidence.

In this article, we summarise some top tips and best practices from our event, which you can watch here.

Think carefully about how to use lived experience testimony

It’s important to keep an open mind about how to bring lived experience into your approach to gathering evidence and presenting these ideas to policymakers.

Traditional research practices position the researcher as the expert. They are responsible for overseeing the data collection and its analysis and will take the executive decision about what themes are most significant.

By contrast, incorporating lived experience evidence allows people to speak for themselves. As Debbie Foster, Professor of Employment Relations and Diversity at Cardiff University and Co- Chair of the Welsh Government Disability Rights Taskforce explained: “They are in the meeting, they are present, they say what their lived experience is and [describe] the variety of their experiences.”

This approach surfaces individual stories, rather than a collective community voice. Making these individual case studies more visible can encourage researchers to develop a more in-depth and nuanced understanding of the barriers people might face. It also helps to challenge the idea of who is considered an expert by creating a platform that allows the evidence to speak for itself, rather than through a conduit.

There are different ways to bring lived experience into the research process, including having working group chairs or research leads with lived experience, co-designing research questions or approaches with lived experience experts, and having lived experience reference groups reviewing and helping to draft research outputs.

Case studies of lived experience can also be used to serve different purposes when communicating policy recommendations. They can act as the basis of recommendations or bring-to-life policy ideas that are based on wider evidence.

Use multiple tools to share findings rather than one final report

The need to gather and analyse lived experience evidence is changing the way we need to think about presenting data, beyond qualitative research. To effectively use lived experiences to influence policy, it is important to be innovative in communicating research findings. Instead of focusing on a single output (typically a report), Rebecca Curtayne, External Affairs Manager at Healthwatch England suggested experimenting with a variety of different media formats and channels, including audio stories, video stories, written stories, surveys, thematic reports, and press engagement. Taking this approach means that examples of the impact of policy issues are widely accessible, so they are useful not only as a tool to influence policymakers but to encourage everyday conversations about policy among the wider public.

Ensure co-production is essential part of the policy design process

Part of conducting lived experience research is about changing the power dynamic of how policy is designed and delivered. As Debbie Foster explained, areas such as emancipatory disability research have taught us the value of bringing people with disabilities into the process of producing their own knowledge.

It’s important that people with lived experience have an opportunity to both be directly involved in how a policy is shaped and also be valued as experts on the impact policies are likely to have or have had in the past.

What this looks like in practice can often vary, as there are multiple approaches to conducting co-produced piece of work. Ultimately, the key is to ensure that equity is at the forefront of how relationships and conversations are framed.

Some standard practices include ensuring that the leadership in an advisory group is representative (such as having chairs and co-chairs with lived experience), working with community researchers to peer review research evidence, and remunerating lived experience experts for their time. It’s also important to encourage and empower individuals and local communities to use their voices, and share any research findings and resources with changemakers with their communities.

Don’t make assumptions about who is a lived experience expert

While it’s important to listen to those with lived experience, it’s equally important to recognise that not everyone holds expertise on a topic. Assuming someone will have lived expertise to share can often be one of the biggest misconceptions in conducting lived experience research. 

Emily Morrison, Interim Director of the Institute for Community Studies emphasised that not every young person, for example, identifies as ‘young’.

“Due to our economic environment, youth is an increasingly big spectrum”.

Instead, when conducting lived experience research, be open-minded and let people decide whether they want to self-define as a particular label or category and whether they feel they are the person who can share lived experience insights on a topic.

Consider where lived experience will bring the most value when factoring in the costs

The reality of conducting lived experience research is that it can be very resource-intensive, and many organisations underestimate the costs involved in conducting this research.

Emily Morrison emphasised that there are many additional costs you need to factor into your budget, such as providing proper financial remuneration (including pensions contributions) and training and accreditation to those who are brought into the process, and ensuring that an organisation’s in-house staff have the time and resources to effectively facilitate lived experience sessions.

“Without such infrastructure, you will break the trust of communities you work with.”

One way to manage budget constraints might be for different organisations to work collaboratively towards a common theme or goal. 

For example, Rebecca Curtayne suggests that instead of having ‘four different organisations, each calling for slightly different things’, it can be beneficial for institutions to work together to coalesce around some broad recommendations. 

This can be particularly effective for advocacy organisations which have significant memberships or constituencies of people with lived experience, making it easier for these organisations to collectively access lived experience with appropriate remuneration.