Lived Experience Research Network
What is the Lived Experience Research Network?
MQ recognises that Patient & Public Involvement, Engagement and Participation (PPIE-P) in mental health research requires a thoughtful and inclusive approach and, through its network, is ideally placed to engage more people with lived experience in such research. Our Lived Experience Research Network (LERN) enables our PPIEP to flourish.
Why should you join our Lived Experience Research Network?
Patient and Public Involvement and Engagement in research is a process that involves actively engaging patients, service users, family members, carers and members of the public in various stages of the research process. For us, that's making sure people living with mental health conditions can share their insights and experience to help shape, direct and support our research interests.
Our philosophy is that research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. We actively encourage applications from people of all backgrounds, communities, and cultures and believe that a range of views and experiences will help us represent all people affected by mental health issues.
Our work with the mental health community is channelled through our Lived Experience Research Network.
Our LERN principles include:
Building Trust and Relationships
- We support our growing network of lived experience communities. This enables us to build long-term relationships with patients and patient organisations. We also engage with academics, industry, and healthcare professionals and are well-placed as a networker to facilitate access to diverse voices to contribute to research that is more relevant, effective, and aligned with the priorities of the mental health community.
Creating Inclusive Platforms
- We value diversity and we continue to educate people with lived experience, their families and the organisations that support them about the impact of their participation on advancing knowledge and treatment options. Through the LERN network we will provide and signpost to educational resources about the research process, terminology, and the potential benefits of engaging in our research interests.
Empowering and Incorporating Lived Experience Input in Study Design
- Through our extensive networks, we can involve people with lived experience and their families in the early stages of research, including study design, to ensure that research questions are relevant and meaningful to the lived experience community. We can seek input on research priorities and methodologies throughout the research lifecycle. We recognise that patient involvement in research also promotes ethical considerations and ensures that studies are conducted with a deep understanding of the impact on individuals’ lives.
Long-term sustainability
- Sustainable efforts to address issues affecting those with mental health conditions require the active participation and support of those directly affected. We are well-placed to advocate for, involve and give access to those voices to ensure the long-term sustainability of initiatives as people with lived experience become partners in driving change.
"Taking part in the recent MQ focus groups, has definitely been one of the great highlights of my time working as a service user researcher. The extraordinary range of experiences and expertise that was represented by the other members ensured that the session was both revelatory and highly accessible on a wide range of complex and sometimes challenging issues around mental health clinical trials.
This was also facilitated with a combination of sensitivity, generosity, and brilliant listening skills which meant that we benefitted from hearing truly diverse perspectives. The facilitator also made us all feel that our knowledge was equally valued and respected, whether we were service users, clinical trial specialists, or consultants. I was particularly impressed by the space she enabled for experts from low and middle income countries to contribute their incredibly valuable insights’."
Max Carlish, lived experience researcher
What is Patient and Public Involvement, Engagement and Participation?
Below is the National Institute for Health and Care Research (NIHR) definition of the ways people get involved in research, showing how ‘involvement’ is distinct from ‘engagement’ and ‘participation’:
Involvement
Involvement is research done with or by patients and the public, not to, about or for them. It is about working collaboratively with patients and the public and sharing decision-making. Examples of public involvement include:
- Acting as members of a project advisory or steering group
- Acting as joint grant holders or co-applicants on a research project
- Identifying research priorities
Engagement
Engagement focuses on raising awareness and sharing research knowledge and findings. Examples of engagement include:
- Attending public science festivals with discussions on research
- Raising awareness of research through media such as television programmes, newspapers and social media
- Disseminating study or research study findings to research participants, colleagues or the public.
Participation
Participation is about people giving formal consent and taking part in a trial or study.
Examples of participation include:
- Taking part in a clinical trial or research study
- Completing a questionnaire or participating in a focus group as part of a research study.
How do I join the Lived Experience Research Network?
Whether you’ve got lots of time to spare or only a little, and whatever your mental health lived experience, it’s easy to become a member of our LERN and participate in opportunities such as surveys, questionnaires, advisory group membership or virtual focus groups.
You can be involved in as much or as little as you like. Every opportunity will be unique and may mean MQ shares your contact details directly with the researchers. We will only do this with your consent. Some opportunities will need more time commitment than others, but we will always let you know what will be involved. Once signed up to our LERN network, we’ll send you information about the different ways to get involved. You must be 18 years old or older to join.
By completing this form, you are agreeing to join MQ’s Lived Experience Research Network. You can opt-out anytime by email or by calling us.
What our collective members say
"It is an incredible experience to be involved in MQ Mental Health research projects.” Says Benny Prawira, founder of Into The Light in Indonesia.
“As a Lived Experience Expert, I participated in a Focus Group discussion led by MQ on "Enhancing Mental Health Literacy: Fostering Mental Wellbeing and Combating Stigma." Explains Kelvin Opiepie, Founder and Director of LEAD Community Foundation in Nigeria.
Contact us
If you have questions about any of our opportunities or feedback for us, you can contact us by emailing us at [email protected]. We're always happy to answer your questions and receive your feedback, so please don't hesitate to get in touch.