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Working with lived experience researchers: a practical framework

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by Jade Maloney, Sharon-Marra Brown, Alexandra Lorigan and Rosie Dale

At AES22, ARTD Consultants' Jade Maloney, Sharon Marra-Brown, Alexandra Lorigan and Holly Kovak presented on a panel with peer researchers, Kirsty Rosie and Rosie Dale, on the practicalities of co-evaluating with lived and living experience (LLE) researchers.

Co-evaluation like co-design is informed by the principle of 'nothing about us, without us.' While co-design recognises the rights of people with lived experience to shape the policies and programs that affect their lives and the way this strengthens policy, co-evaluation recognises the expertise that people with lived experience bring to designing measures of success, collecting data and making sense of findings and the way this can strengthen evaluation. 

Key take-aways from the presentation included:
  • the evaluation commissioner and evaluation team having a shared commitment to genuine engagement that ensures LLE researchers have the ability to shape the work
  • the need for the evaluation team and evaluation commissioner to be flexible and open to things changing as the evaluation progresses. 

The ARTD team provided a framework that sets out an approach to engaging with lived and living experience team members in a concrete way (covered in brief below) and discussed with the panel of LLE researchers what makes this kind of collaboration work.

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From the LLE researchers' perspective, the things that make this kind of collaboration work are deep listening, being able to function in a state of uncertainty and not knowing, transparent communication and checking in on assumptions and shared vision. Rosie Dale worked with ARTD on co-producing and evaluating an aftercare support service for children and young people following significant suicidal ideation, self-harm or a suicide attempt. She has summarised her experience of what makes co-evaluating with lived experience researchers work, below. 

What's the reality of being a peer researcher?
Rosie Dale, Peer Researcher
Where do you feel you've been able to make the most difference?

It is very fulfilling and rewarding to represent someone with lived experience. I also enjoy having opportunities to give input into lots of little things (e.g., referral forms, experience measures, survey questions, co-production workshop, program logic, outcomes matrix, evaluation methods) which all add up to something big! Participating in both the evaluation with ARTD and the co-production workshop held by the aftercare service gave me unique insights. It felt empowering to see my name and quotes appearing in the co-production report.

What helps you do this?
Being a part of a back-and-forth conversation really helps, as well as having my feedback taken on board and actually implemented, not just acknowledged. It's also helpful to be presented with diverse opportunities to give feedback on a variety of things, and to be able to be part in the development of the evaluation project over an extended period of time (rather than giving a one-off contribution). It also really helps to have other peer researchers in the team, so I have someone to bounce ideas off who thinks on a similar wavelength.

What helped you to feel a part of the team?
A few things:

  • consistent, ongoing communication with more or less the same people over an extended period of time (not a one-off interview or seeing different people each time).
  • multiple and flexible communication methods (e.g., phone call, online meetings, face to face, emails, etc.)
  • being paid appropriately
  • time taken to get to know people as people, not just workers (e.g., through informal conversations, ice breakers, team meetings). In other words, being treated like a co-worker (which also includes the formal aspects such as timesheets, training, a work email, contracts, payment, etc.)
  • being regularly asked for feedback and encouraged to give my opinion on something

What is challenging about co-evaluating?I believe that we all have the same goal, but due to different ways of thinking and values, we end up wanting to achieve it in so many different ways! There can be so many different questions, different ways of asking these questions, and different ideas on the best way to ask these questions. Everything from life experience to tertiary studies can inform how we go about asking things and what we think should be prioritised.


What is important to consider in managing power dynamics?
Not being the only peer researcher means feeling less like I'm in a token role, and that my expertise is valued (since one peer researcher can't encompass all experiences). It's also important to remember that a peer researcher doesn't have to share aspects of their lived experience they are not comfortable sharing, but at the same time it shouldn't be awkward if they do share - after all, they are still an employee. It's also beneficial to reflect on the terminology of the role 'peer' researcher – a peer is an equal, with less of the imbalance that often exists in health services. On top of this, it is vital for a peer researcher to be part of a collaborative process with the project and team, not just for – this gives a sense of collective ownership.

What do organisations (evaluators and evaluation commissioners) that want to work with peer researchers need to consider?

  • It is important to consider what their motivation is for hiring a peer worker. Is it just because they were told they should, or are they genuinely passionate about the difference it can make?
  • They need to be clear about what lived experience is, and why the person is applying for the peer researcher role: what does the peer researcher want to gain from their contributions? Organisations also need to consider the specific experience/skills of a peer workers when recruiting, because lived experience can be very broad and diverse.
  • A peer researcher is just as capable and functioning as other members of the team, they just happen to be open about having lived experience and actively use it to inform their contributions. Other team members may also have LLE but just not use this in their work.
  • Validation and support comes in many ways! Salary, regular communication, flexibility, language, being inclusive, etc.

The ARTD team looks forward to continuing to develop our framework, and insights around working with LLE researchers. Read a more in-depth overview of our insights and panel discussions here

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Jade Maloney
Jade is the Managing Director and a Partner at ARTD. She works with government agencies, not-for-profits and citizens to co-design, refine, communicate and evaluate social policies, regulatory systems and programs. She is passionate about ensuring citizens have a voice in shaping the policies that affect their lives, translating research into real world contexts, and ensuring evaluations are useful and used.


Sharon-Marra Brown
Sharon is a Senior Manager at ARTD. She describes her work as being curious for a living, and is an evaluation and organisational performance specialist, combining technical excellence with emotional intelligence. Sharon has a wealth of experience of work in the public service and consulting in health, mental health and suicide prevention. 

Alexandra Lorigan
Alexandra is a Senior Consultant at ARTD, where she supports evaluations and reviews in areas of complex social policy, most commonly in the mental health and disability sectors. She is passionate about building social inclusion through initiatives that support or build the capacity of people with lived experience, their families and carers, and the organisations supporting them. 

Rosie Dale
Rosie is passionate about using her lived experience with mental illness to reduce stigma and increase hope. She represents the lived experience sector and hopes to encourage mental health services and systems to be more trauma informed and lived experience/peer worker designed.

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