Public Health Needs to Re-Evaluate How It Incorporates Lived Experience Perspectives

Jeanna Pillainayagam is completing her Masters of Public Health at McMaster University

The methods for evidence-informed decision-making (EIDM) in public health, including researching and developing public health policies and interventions, are ever-changing. One practice that has been steadily gaining traction over the years is including lived experience perspectives and voices in these processes (Feige & Choubak, 2019; Jenkins et al., 2024). There is a plethora of resources available on the best practices for engaging people with lived experience (PWLE) (ASPE, 2021; Bailey et al., 2024; Dembele et al., 2024; Hawke et al., 2018; McCabe et al., 2022; WHO, 2023). 

Despite that, there are so many things that public health researchers, policymakers and decision-makers can be doing much better in terms of incorporating lived experience voices. As someone who has been a part of health research/health organization lived experience advisories for a number of years, here are a few of the things that I think need to be addressed if we want lived experience perspectives to be more meaningfully incorporated into public health decisions:

Evaluating How We Value Types of Evidence

One of the fundamental issues is that lived experience evidence often seems to be viewed as a supplementary component of EIDM in public health (Dholakia, 2020). There is a common sentiment that while they are nice to include, the situation will not be dire if we do not hear from those directly impacted by public health decisions. Public health decision-makers tend to give far more value to quantitative data, partly because it is more objective, and thus, seems more credible and generalizable. I cannot understate the importance of quantitative research evidence in EIDM. However, there are some things that numbers cannot capture, and there are some instances where prioritizing objectivity is not helpful. There are some things that even the most accomplished experts cannot know, if they have never lived through them. 

Quantitative data may be able to tell us what we should do, but it is often not persuasive enough alone. It also tends to blur all experiences into a singular trend or picture and can fail to speak to the needs of underserved, equity-deserving individuals. Raw human experiences are perhaps the most compelling testimony regarding the need for a particular action. Some people also tend to view quantitative data as more trustworthy. They think that an observational study with enough people will have findings that are more likely to speak to reality than trusting the lived experiences of a few people. As a result, many people fail to see that the two forms of evidence offer very different information and both need to be valued. The observational data may say if an intervention worked, but it is hearing from the lived experiences of individuals that helps identify why it did or did not work, and what are the missing pieces in the stories that researchers and decision-makers did not even think to ask about. 

Finally, there are so many public health issues that have still not been researched, that are still lacking primary data (Beames et al., 2021; Brett et al., 2014). Incorporating the perspectives of PWLE can help identify some of those research gaps and bring prevalent but poorly-researched public health issues to the forefront (Beames et al., 2021; Brett et al., 2014, Sunkel & Sartor, 2021; WHO, 2023).  

Bridging the Tension 

One of the core features of public health is that it is forward-thinking. Public health decision-makers need to respond to the health needs of an ever-changing world, even when there are not adequate resources or data to support that mission. This can commonly result in not being entirely sure what the best course of action is, and a need for trial and error. When bringing lived experience and academic voices to the table together in those moments, there can be tension and a lack of consensus on the best ways to proceed. As we bring these two groups together more frequently, we do not know how to bridge that tension, which is leading to ineffective policy decisions being made in some spaces. It also can further fracture and divide the two groups and lead to some voices being silenced in these discussions. A lack of action regarding this tension has and will continue to result in certain groups refusing to sit at the table with others, or the exclusion of certain groups from the table to avoid discomfort. 

While it is likely not possible to please everyone, I think more can be done to alleviate some of this tension. For instance, in my experience, public health organizations facilitating these discussions often do not actually facilitate. They bring together these two groups of experts, let them talk amongst themselves, and expect them to come to a decision together without any sort of mediation. Sometimes a neutral third party is needed to help guide these discussions and make sure everybody’s voices are heard, especially because they are about issues that are really important to those involved. 

Lack of Accountability 

We have heard time and time again from PWLE consulted in public health research or decision-making, whose input is either ignored entirely, or who never reap the full benefits of providing input (Bailey et al., 2024; Cheng & Smith, 2009; Feige & Choubak, 2019; Jenkins et al., 2024; WHO, 2022; WHO, 2023). In research in particular, there are not many accountability mechanisms that protect PWLE from any harm they may face in the process. The reality is that tokenism is a problem that runs rampant in a lot of research spaces that seek to engage PWLE (Bailey et al., 2024; Cheng & Smith, 2009; Feige & Choubak, 2019; Hawke et al., 2018; Jenkins et al., 2024; WHO, 2023). Engagement is often seen as a checklist item and does not inform the decisions that are made (Bailey et al., 2024; Cheng & Smith, 2009; Feige & Choubak, 2019; Hawke et al., 2018; Jenkins et al., 2024; WHO, 2023). Some PWLE have been lied to by researchers and over-promised benefits that never materialize (Bailey et al., 2024). Moreover, the significant power imbalances in these relationships between researchers and PWLE makes it hard for PWLE to do anything about the harms they face (Bailey et al., 2024; WHO, 2023).

 
To give a personal example, one time I was on a lived experience advisory committee for a research project that was wrapping up. The Principal Investigator (PI) shared their end-of-grant report with the committee members and asked for any feedback. After reading though the report, I noticed that the PI had lied about providing all of these different training opportunities to us, when in reality, we had received no training at all. But what was I supposed to do? Call the PI a liar to their face? I had no way of contacting anyone to report this, and quite frankly, I could only see myself potentially facing negative consequences from doing so. 

There are no ways of seeking accountability that do not involve directly confronting researchers and relying on them to hold themselves accountable. This has led to a lot of broken trust in the research system among PWLE and feelings of disempowerment (Bailey et al., 2024; Feige & Choubak, 2019; RNAO, 2024). It is important to remember that intent is not the same as impact, and while most researchers are not trying to cause harm and actually want to make a positive difference, harm can still occur without the proper safeguards and mechanisms in place (Bailey et al., 2024; Feige & Choubak, 2019; WHO, 2023). At a time when trust in public health is so paramount, it is important to establish practices that fortify that trust (WHO, 2022; WHO, 2023). 

It is essential to fix these issues in our current engagement practices in order to properly capture the rich tapestry of human experiences. The alternative is to overlook key flaws in programs or policies that only lived experience can identify. To ignore the unique insights of those directly affected by policies. To alienate people who want to help make public health decisions more targeted and impactful. And to make people feel like they do not have a role to play in promoting and protecting their own health. 

References

Assistant Secretary for Planning and Evaluation (ASPE). (2021). Engaging People with Lived Experience to Improve Federal Research, Policy, and Practice. U.S. Department of Health and Human Services. https://aspe.hhs.gov/lived-experience

Beames, J. R., Kikas, K., O'Gradey-Lee, M., Gale, N., Werner-Seidler, A., Boydell, K. M., & Hudson, J. L. (2021). A New Normal: Integrating Lived Experience Into Scientific Data Syntheses. Frontiers in Psychiatry, 12, 763005. https://doi.org/10.3389/fpsyt.2021.763005

Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations, 17(5), 637–650. https://doi.org/10.1111/j.1369-7625.2012.00795.x

Cheng, R., & Smith, C. (2009). Engaging People with Lived Experience for Better Health Outcomes: Collaboration with Mental Health and Addiction Service Users in Research, Policy, and Treatment. 

Dembele, L., Nathan, S., Carter, A., Costello, J., Hodgins, M., Singh, R., Martin, B., & Cullen, P. (2024). Researching With Lived Experience: A Shared Critical Reflection Between Co-Researchers. International Journal of Qualitative Methods, 23. https://doi.org/10.1177/16094069241257945

Dholakia, A. (2020, November 19). Community Engagement and the Expertise of Lived Experience. Root Cause. https://rootcause.org/field_notes/community-engagement-and-the-expertise-of-lived-experience/

Feige, S., & Choubak, M. (2019). Best Practices for Engaging People with Lived Experience. Community Engaged Scholarship Institute. https://atrium.lib.uoguelph.ca/server/api/core/bitstreams/0b9b1e82-c0f4-4729-ae35-b07356d98922/content

Hawke, L. D., Relihan, J., Miller, J., McCann, E., Rong, J., Darnay, K., Docherty, S., Chaim, G., & Henderson, J. L. (2018). Engaging youth in research planning, design and execution: Practical recommendations for researchers. Health Expectations, 21(6), 944–949. https://doi.org/10.1111/hex.12795
Jenkins, C. L., Mills, T., Grimes, J., Bland, C., Reavey, P., Wills, J., & Sykes, S. (2024). Involving lived experience in regional efforts to address gambling-related harms: going beyond ‘window dressing’ and ‘tick box exercises’. BMC Public Health, 24, 384. https://doi.org/10.1186/s12889-024-17939-7

McCabe, E., Amarbayan, M., Rabi, S., Mendoza, J., Naqvi, S. F., Thapa Bajgain, K., Zwicker, J. D., & Santana, M. (2023). Youth engagement in mental health research: a systematic review. Health Expectations, 26(1), 30-50. https://doi.org/10.1111/hex.13650

Registered Nurses’ Association of Ontario (RNAO). (n.d.). Engaging persons with lived experience. https://rnao.ca/bpg/leading-change-toolkit/engaging-persons/engaging-persons-with-lived-experience#section-4525

Sunkel, C., & Sartor, C. (2021). Perspectives: involving persons with lived experience of mental health conditions in service delivery, development and leadership. BJPsych Bulletin, 46(3), 160–164. https://doi.org/10.1192/bjb.2021.51

World Health Organization (WHO). (2022). Implementing citizen engagement within evidence-informed policy-making: an overview of purpose and methods. https://iris.who.int/bitstream/handle/10665/364361/9789240061521-eng.pdf?sequence=1

World Health Organization (WHO). (2023). WHO framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions. https://iris.who.int/bitstream/handle/10665/367340/9789240073074-eng.pdf?sequence=1