Including people with lived experience in evidence-informed approaches

Authors: April English, Jack Nunn and Ana Pizarro

Introduction

We are all living through a polycrisis. This word attempts to describe interrelated and disparate crises that mutually reinforce one another, including the COVID-19 pandemic, climate change, wars, and the breakdown of democratic processes around the world. To understand these crises, we need reliable and trusted information. Instead, what many now face is an ‘infodemic’ of both misinformation and disinformation. 

The global polycrisis poses a significant threat to the wellbeing of people worldwide. However, the polycrisis also provides us with an opportunity to ‘do better’, challenging us all to respond to this situation to improve the health and wellbeing of people worldwide. To do this, we need to improve everyone’s access to reliable and trusted information.

Including consumers in evidence-informed approaches

At Cochrane, we use the term ‘consumers’ to describe patients, carers, family members, and the public who have first-hand experience of a healthcare condition. 

In a rapidly evolving and increasingly interconnected world, evidence-informed approaches are critical. Although we often think about evidence as ‘explicit’ knowledge, consisting of health data and health research, involving people is an important step in evidence-informed decision-making. The World Health Organization (WHO) (2021)  defines ‘tacit’ knowledge, comprising the views, perspectives and lived experiences of policymakers, stakeholders and citizens, policymakers, stakeholders and citizens.

With reference to involving people with lived experience in evidence-informed decision-making, the WHO states:

• Participatory processes and including the voices of citizens in policy-making [...] increases public interest in, and understanding of, evidence and political processes, which, in turn, enhances the legitimacy of policy decisions as well as societal trust. However, despite its benefits, the lived experience and tacit knowledge of citizens remain underrepresented in policy processes.

The recently adopted WHO resolution on ‘Social participation for universal health coverage, health and well-being’ also emphasises the importance of ‘social participation mechanisms to facilitate two-way dialogue between governments and people, communities and civil society’.

Addressing a global polycrisis provides an opportunity to involve and engage with people and communities. This helps to build a culture within evidence ecosystems that fosters effective, meaningful and equitable co-production of evidence and interventions, including countering misinformation and disinformation. It also requires recognising the important role of civic mobilisation, social movements and improving ways in which individuals can make a difference.

By taking an evidence-informed approach to involvement and engagement, we can learn which approaches work well and why (example). This can help us answer the question, ‘How should we involve people?’

Below are some examples of where Cochrane has involved consumers in producing evidence and building evidence eco-systems.

Fighting misinformation and disinformation through consumer networks during the pandemic

In our rapidly evolving digital age, we are constantly bombarded with information. This phenomenon, known as an ‘infodemic’, was starkly evident during the COVID-19 pandemic. With an overwhelming influx of information about the virus—ranging from its transmission to its prevention and treatment—consumers were often left sifting through a mix of accurate data, as well as misinformation and disinformation. This experience highlighted the critical need for reliable, evidence-based information to guide public health decisions and personal health practices.

During the pandemic, it seemed that misinformation spread as quickly as the virus itself. Unverified claims about the origins of the virus, the efficacy of certain treatments, and the safety of vaccines circulated widely on social media and other platforms. This created confusion and fear, undermining public health efforts and leading to real-world consequences. Amidst this chaos, the importance of trusted sources of information became paramount. The COVID-19 Consumer Rapid Response Group was pivotal in disseminating reliable information and debunking myths. 

The Consumer Rapid Response Group curated and shared resources that were specifically tailored to address the most pressing concerns of the public. The group created comprehensive guides, answered frequently asked questions (FAQs), and worked tirelessly to correct misinformation as it emerged. 

By leveraging social networks and websites, the Cochrane Consumer Network played a crucial role in providing accurate, evidence-based information to the public and helping individuals make informed decisions about their health and wellbeing. They also engaged with the community, answering questions and helping to prioritize research areas that needed urgent attention.

However, the struggle against misinformation and disinformation is not limited to health crises such as the COVID-19 pandemic. In times of crisis, the spread of false and purposely misleading information can have devastating effects.

Co-creating evidence around mental health in a polycrisis

Living through a polycrisis can risk overwhelming all of us. As well as highlighting the importance of trusted sources of information, the COVID-19 pandemic emphasised the importance of people’s mental health. We need to give careful consideration to how information is shared, ensuring it can help people make informed decisions; information needs to help people, rather than overwhelm, confuse or unintentionally scare them. Co-creating information and deciding how it is disseminated together with people from different cultures and languages can improve how information is shared.

At the same time, we need to ensure that mental health services around the world are appropriate and well-resourced. This requires involving people with lived experience of mental health issues, working alongside professionals and researchers to design, deliver and evaluate mental health services across different regions and cultures. 

The Global Alliance for Living Evidence on aNxiety, depressiOn and pSychosis (GALENOS), a project supported by Cochrane, paves the way for people with lived experience of mental health issues to be involved in identifying the research questions that most urgently need to be answered. Involving those with lived experience of mental health issues gives people a ‘chance to be involved in research that affects their lives’, and can lead to services that better meet the needs of people who use them.

We also need to accept the genuine and reasonable mental distress that the polycrisis may be causing people (Marks & Hickman, 2023). This unprecedented time provides an opportunity to work with people around the world. By understanding responses to the emerging realities, we can begin to reframe the way we work collaboratively and co-create ways of harnessing our emotional reactions to better solve the problems facing us. For some people, just the knowledge that we are using evidence-informed methods to respond to the many challenges facing humanity may be a way to keep us hopeful and maintain good mental health. 

Organisations such as those involved in World Evidence-Based Healthcare Day can help ensure trusted that evidence finds the right people in the right places, that evidence is provided in accessible formats, and that people are empowered to critically appraise information.

Conclusion

From our learning over the years, we have reflected on a few considerations for engagement and involvement when addressing polycrises:
•    Organisations must allocate resources (for example, time, budget and staffing) from the very beginning of a project, to ensure genuine engagement and involvement in health research. Ideally, we want to involve people from the very start of a project to the very end, but there are other options available when this is not feasible. Learn more.

•    Power imbalances must be addressed. Remember, at the end of the day, public, engagement and involvement is about relationships. Bring a human element to your work—be open about your own motivations, be vulnerable, share your own stories, and have a coffee chat with individuals. These elements matter. Ensure people from multiple perspectives are involved (people from different backgrounds, cultures, languages, ethnicities and gender identities). This can help ensure research, policy, programs and practices, and the way these are communicated, is relevant, understandable and available where people need it. Learn more.

As we celebrate World Evidence-Based Healthcare Day, it is essential to acknowledge the critical role that accurate, evidence-informed information plays in public health. The lessons learned from the COVID-19 infodemic underscore the importance of having trusted sources of information and the need for continued vigilance against misinformation and disinformation. The work of Cochrane’s consumer network and other similar networks is more vital than ever. By promoting evidence-informed practices and empowering consumers with reliable information, such networks help to create a more informed and resilient society. As we face future challenges, whether they be health-related, environmental or geopolitical, the principles of evidence-informed healthcare should remain a cornerstone of our collective response.

References

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Gherghina, S., & Miscoiu, S. (2016). Crowd-sourced legislation and politics: The legitimacy of constitutional deliberation in Romania. Problems of Post-Communism, 63(1), 27–36.    

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Marks, E., & Hickman, C. (2023). Eco-distress is not a pathology, but it still hurts. Nature Mental Health, 1, 379–380. 

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Sriram, V., Topp, S.M., Schaaf, M., Mishra, A., Flores, W., Rajasulochana, S.R., & Scott, K. (2018). 10 best resources on power in health policy and systems in low- and middle-income countries. Health Policy Planning, 33(4), 611–621.

World Health Organization. (2021). Evidence, policy, impact: WHO guide for evidence-informed decision-making. https://apps.who.int/iris/handle/10665/350994

World Health Organization. (2022). Implementing citizen engagement within evidence-informed policy-making: An overview of purpose and methods. https://www.who.int/publications/i/item/9789240061521

World Health Organization. (2024). Social participation for universal health coverage, health and well-being.  https://apps.who.int/gb/ebwha/pdf_files/WHA77/A77_R2-en.pdf

Disclaimer
The views expressed in this World EBHC Day Blog, as well as any errors or omissions, are the sole responsibility of the author and do not represent the views of the World EBHC Day Steering Committee, Official Partners or Sponsors; nor does it imply endorsement by the aforementioned parties.