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Lived Experience Survey Design

Presenter(s): Michelle Jones


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Surveys are often an overlooked research method in Lived Experience Research due to its reputation as a quantitative research method. However, surveys can be particularly useful in lived experience research and can be used in different ways to gather information and insights from people with lived experience. 

How can surveys be used in Lived Experience Research?

There are three different approaches to designing surveys in lived experience research. 

  1. Designing a research survey for people / participants with lived experience – this involves the researcher leading on all aspects of the survey, including designing, building, disseminating, and analysing the findings. The survey will be distributed to people with lived experience, e.g. sending a survey to people with lived experience of coeliac disease to better understand their experiences of living with the condition. 
     
  2. Designing a research survey with people with lived experience – this involves people with lived experience working alongside the researcher, working together collaboratively to produce a survey which can be distributed to people who may not have lived experience, but are involved with the community, e.g. people with lived experience of coeliac disease sending a survey to restaurant owners to better understand concerns about providing gluten free menu choices. 
     
  3. Designing a research survey with people with lived experience for people with lived experience – this involves the researcher working alongside people with lived experience who will share their experiences to shape and develop the survey, build the survey, work with their networks and communities to disseminate the survey, and have the opportunity to analyse survey findings with the lead researcher’s support. The survey will be distributed to people with lived experience, e.g. people with coeliac disease designing and sending a survey to other people with coeliac disease to better understand their experiences of dining in restaurants. 



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How to design a survey that can be used in Lived Experience Research?

Begin by defining the purpose of the survey. Ask yourself what insights you are seeking and how the survey will benefit the community. Is the goal to gather feedback, shape a service, or provide a platform for sharing experiences? Your answer will influence not only what questions you ask, but also how they are framed.

Involve people with lived experience early—ideally from the design stage. Their input ensures that the language used is sensitive, the topics covered are relevant, and the tone of the survey is appropriate. Co-producing the survey with lived experience contributors can also build trust and make the project more inclusive.

When building the survey, avoid lengthy or mandatory questions that may burden participants. Use a combination of closed and open text questions, allowing participants to skip questions or explain their answers in their own words. Design the survey so that it can be paused and resumed later—particularly important if the content is emotionally demanding.

Ethical design is central. Include trigger warnings, informed consent statements, and signposting to support services at multiple stages—such as in the welcome message and before sensitive questions. Also consider whether any exclusion criteria apply (e.g., recency of experience) and be transparent about this from the start.

Before launch, test the survey with a small group, including people with lived experience. Check for usability across devices, clarity of questions, and the emotional tone. Ensure that accessibility tools—like screen readers or larger text options—are compatible with the survey platform.

In terms of language, avoid jargon and ensure terminology resonates with the community involved. Offering respondents a chance to remain anonymous or use pseudonyms encourages openness, while giving participants the opportunity to provide final comments ensures no important insight is missed.


Further Ethical Considerations in Survey Design

It is important to consider whether a survey is the appropriate method when engaging people with lived experience. This resource has highlighted examples where a survey can be beneficial in lived experience research, however, it is important to consider ethical risk and the mitigations prior to conducting surveys with a lived experience community. 

Consider the purpose of your engagement with the lived experience community or group, ensuring that the reason for the research is ethical. The subject matter is likely to be sensitive and the survey will ask people to reflect and share their personal experiences. It is important to ensure that questions are asked sensitively, and the purpose of the question is clear. Include any relevant signposting information if applicable. 

                        For example, 

Q. ‘Have you ever visited A&E to seek mental health support?’   

                        Vs.

Q. ‘If you feel comfortable sharing, please tell us about any relevant experiences you may have had attending A&E to seek mental health support? 

This information will help us to better understand people’s experiences when visiting A&E and our findings will be developed into a best practice guide for medical staff. Please note that if you require support, please contact XXX.’ 

            

Consider the layout of the questions asked. For example, avoid placing too many open text questions on the same page. We suggest one or two open text questions per page. Mix open and closed text questions to encourage engagement and interest. 

Be clear about whether or how survey responses will be attributed. Some participants may wish to remain anonymous; others may use a pseudonym. However, it is important to ensure that any personal or identifying information within the stories or narratives is removed, whilst maintaining the authenticity of the voices telling the story or experience. It may be possible to merge or weave stories together, so that participants cannot be identified. However, it is important to be transparent when stories have been weaved together so that the participants understand why this approach has been taken and that their story has not been exaggerated or become fictitious. 

Ensure that those with lived experience are compensated for their time spent involved in supporting the research project; this includes those involved in the research design as well as participants in the project. 

 

> Download a worksheet (with a checklist of considerations when designing surveys).




Supporting materials

About the author

Michelle Jones completed her ESRC funded doctorate at Aberystwyth University in 2016. Since then, Michelle has worked in both the academic and charity sectors advocating for the involvement of people with lived experience in research and supporting organisations to better understand the benefit of lived experience involvement. Michelle has worked across numerous projects alongside people with lived experience of military trauma, childhood sexual abuse, sexual abuse, and mental health concerns. 

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