Becoming a lived experience partner
What is a lived experience partner / partner with lived experience?
A partner with lived experience (or a lived experience partner) has personal or lived experience of a health issue. They can also be informal caregivers, like family and friends. They share their perspective and insights to help shape the research process. As a partner with lived experience, you can use your voice to inform how research studies are carried out. You won’t provide data for the study, but you’ll help the researcher make decisions about how the study’s design. This makes research more relevant and meaningful for lived experience partner, the end users of the work.
The phrases ‘partner with lived experience’ or ‘lived experience partner’ can be used interchangeably. In addition, some lived experience partners prefer the term ‘patient’.
Join a research team to help think of new questions and inform research opportunities
Join a research advisory committee and share a patient's point of view
Who can be a lived experience partner?
A lived experience partner can be:
- Anyone with lived experience of a health condition or health system
- A caregiver or family member to a lived experience partner
- A community member with personal experience related to the study
Why become a lived experience partner?
By acting as an advisor to a research team, you ensure that the perspectives of a lived experience partner shape the way research is done. This can make research more relevant and useful.
Turn your experience into action
Use your personal journey to help researchers and clinicians improve the way healthcare is delivered. By working together, you ensure that medical studies are built on the foundation of real lived experience partners.
Influence the future of research
Help the research community understand which priorities and health outcomes actually matter most to lived experience partners. Your input ensures that scientific findings are relevant, useful, and capable of making a true impact.
Be a voice for quality improvement
Ensure the perspective of lived experience partners is embedded at every stage of healthcare, from the lab to the clinic. Your involvement helps speed up the transition of research into practice, leading to better outcomes for everyone.
What is patient-oriented research?
Research done with lived experience partners is called patient-oriented research. In patient-oriented research, patients and caregivers have an active role in shaping the decisions that are made on a health research project. This includes the way the research is done, how it is shared, and what is measured. It can bring together lived experience partners, researchers, health care providers and health system decision-makers.
Learn more about patient-oriented research
For more information about patient-oriented research and resources for working with partners with lived experience, contact the BC SUPPORT Unit and find your regional centre contact.
Resources
If you’re interested in learning more about how participating as a lived experience partner, explore our patient engagement resources or available training and supports.
Access tools that help you navigate your role as a lived experience partner, supporting your collaboration with research teams.
Use this road map to explore the stages of a research study, and to consider the many ways of engaging with partners with lived experience on a health research team.
Ready to make an impact?
Sign up as a volunteer today and REACH BC will notify you when you're matched with exciting research opportunities.
