The importance of involving patients and the public in the research

This blog was written by Mariana Bolivar, Program Lead in Mental Health Inequality at MQ Mental Health Research.

Experience is everything in life. Experience can equal experience. And when it comes to mental health research, ignoring the experience of these patients and the public living with mental illness seems counterintuitive. However, in the past, many areas of research have already overlooked these critical inputs. Vital insights were ignored.

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

Listening to the voices of those with live experience is called Patient, Public, and Involved Participation (PPIE) and in that field it’s been there Strong development in recent years. recent AMRC Transfer And the statment On PPIE, show how research charities, like MQ, are engaging the voices of living experienced people. Much of this is due to your support.

MQ has long been an advocate of PPIE. We recently drove a depression Prioritization process, management of the Youth Advisory Group (YPAG), PPIE assessment of grant applicants, monitoring of awardees’ PPIE activities, and provision of strategic advice.

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

Our research goal is to improve people’s lives. To do this to the fullest extent of human experience, we engage the audience in our research in the broadest possible definition of “audience.” This means getting input from live-experienced caregivers, service providers, industry and policy makers among others.

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

• 74% of our funded research has already created partnerships to drive the work forward
• 94% of the studies identified key stakeholders.
• 85% of our projects involve PPIE strategies.

Prioritizing research topics

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

• 7 experts with live experience, 3 of whom are from low- and middle-income countries, are currently contributing to the ongoing Lancet-MQ panel on the Covid-19 pandemic and mental health along with 30 other experts from research, policy and practice.
• 6 experts with live experience, 3 of whom are from low- and middle-income countries, also contribute to the Gone Soon panel, which focuses on premature mortality and mental health.

Choose the research to be funded

Live experience experts are also part of our funding committees.

• The review panel for the ongoing MQ 2022 round of fellows included 8 regular reviewers to ensure that our funded research responds to the most important needs and gaps of people who leave with mental illness.

Do the research

The integration of expert training through experience and researchers alike is the backbone of the success of PPIE’s activities. Investing in training will realize the true potential of PPIE’s activities in the future.

We want to support our talented researchers in their career growth. In the strategic Growing Talent programme, we encourage greater diversity in research experience and expertise, working alongside others in the sector to expand available career path opportunities, including salary advancement, for those whose potential may previously have been unrealized.

“The key message I want to pass on to all of you is the amazing value that diversity brings to the life experience, which includes cross-cultural experience and experiences from different types and types of work.

The more diverse experiences we have as individuals, the greater the challenge we face in thinking more deeply and questioning assumptions we might bring to the negotiating table. – Nev Jones.

Watch Neff’s talk about career paths in mental health research here.

MQ will continue to:

• Amplify the voice of people with live experience, ensuring that they are valuable contributors throughout the mental health research landscape.
• Evaluate and monitor PPIE plans and activities for applicants and award recipients across projects.
• Incorporate the perspectives of live experience experts into funding decisions and setting strategic research and development priorities.
• Learn from others in the sector and share best practices to enhance visibility of this emerging discipline. This includes membership of the International Alliance of Mental Health Research Funders’ Living Experience Working Group and the Charity Research Participation Group of the International Alliance of Mental Health Research Funders Shared learning group about sharing.

At MQ we are committed to raising the voices of people with lived experience and diverse perspectives. Hearing from others expands our knowledge and understanding of our human experience. Expanding the diversity of experiences that we deal with broadens our horizons. We have no interest in defining our horizons when it comes to understanding what it means to be human. And the human experience is precisely what we’re interested in exploring at MQ.

You can read more about joint production here.

If you are interested in participating in the research, you can Volunteer here.