Social illness

The importance of involving patients and the public in research

This blog was written by Mariana Bolivar, Mental Health Inequalities Programme Lead at MQ Mental Health Research.

Experience is everything in life. Experience can equate to expertise. And when it comes to mental health research, ignoring the experience of those patients and the public living with mental illness themselves seems nonsensical. And yet, in the past, many areas of research have indeed omitted this crucial input. Vital insights have been ignored.

For mental health research to reach its full potential for impact, the field must incorporate the expertise of people with lived experience of mental health conditions.

Listening to the voices of those with lived experience is called Patient and Public Involvement and Engagement (PPIE) and in this field there has been strong development in recent years. AMRC’s recent report and statement on PPIE,  show how research charities, like MQ, involve the voices of those with lived experience. Much of this is down to your support.

MQ has long been an advocate of PPIE. Recently we led a Depression Priority setting process, ran a Young People’s Advisory Group (YPAG), assessed grant applicants’ PPIE, monitored awardees’ PPIE activities, and delivered strategic consultation.


MQ involve patients and the public at all stages of the research pathway.

Our research goal is to improve people’s lives. To do so for the greatest breadth of human experience, we involve the public in our research with the broadest possible definition of “the public”. This means getting input from those with lived experience, carers, service providers, industry and policy makers amongst others.

Crucially, this also includes consulting these people in the design and planning of the research

  • 74% of our funded research has already established partnerships to move work forwards
  • 94% of studies have mapped key stakeholders.
  • 85% of our projects include PPIE strategies.


Prioritising research topics

All our activities include the input of those with lived experience at every stage. We compensate them for their help according to AMRC guidelines and take appropriate measures to ensure their voices are equally heard and respected. We are also increasing our efforts to diversify our pool of lived experience experts, particularly targeting people from traditionally disadvantaged populations.

  • 7 lived experience experts, 3 of whom are from low and middle income countries, currently contribute to the ongoing Lancet-MQ Commission on Covid-19 pandemic and mental health alongside with other 30 experts from research, policy and practice.
  • 6 lived experience experts, 3 of whom are from low and middle income countries, contribute as well to the Gone too Soon Commission, focused on early mortality and mental health.


Choosing what research to fund

Lived experience experts are also part of our funding panels.

  • The reviewing panel for the ongoing MQ 2022 Fellows round included 8 lay reviewers to ensure our funded research is responsive to the needs and gaps which are most important for people leaving with mental health conditions.


Carrying out the research

Integrating Training for Experts by Experience and researchers alike is a backbone to the success of PPIE activities. Investing in training will lead to realising the true potential for PPIE activities in the future.

We want to support our talented researchers in their career growth. In our Growing Talent strategic programme, we encourage more diversity of experience and expertise in research, working alongside others in the sector to expand the career pathway opportunities available, including salary progression, for those who previously might have had their potential unrealised.

“The core message I want to convey to you all is the incredible value that a diversity of life experience brings, and that includes cross cultural experience and experience of different types and kinds of work.

The more diversity of experiences we have as individuals, the more we are challenged to think more deeply and to question assumptions we might otherwise bring to the table.” – Nev Jones.

Watch Nev’s talk on Career Paths in Mental Health Research here.


 MQ will continue to:

  • Amplify the voice of people with lived experience, and ensure they are valued contributors throughout the mental health research landscape.
  • Assess and monitor applicants’ and awardees’ PPIE plans and activities throughout the projects.
  • Incorporate lived experience experts’ perspectives in funding decisions, research priority setting and strategic development.
  • Learn from others in the sector and share best practice to enhance the visibility of this emergent discipline. This includes membership of the Lived Experience Working Group of the International Alliance of Mental Health Research Funders and the Charities Research Involvement Group of the Shared Learning Group on Involvement.


We at MQ are committed to elevating the voices of those with lived experience and diverse points of view. Hearing from others expands our knowledge and understanding of our human experience. And expanding the diversity of the experiences we engage with expands our horizons. We have no interest in limiting our horizons when it comes to understanding what it means to be human. And the human experience is precisely what we, at MQ, are interested in exploring.

You can read more about co-production here.

if yu are interested in getting involved in research you can volunteer here.

Source link
#importance #involving #patients #public #research

Related Articles

Leave a Reply

Your email address will not be published. Required fields are marked *