by Ava Silverman

Ava Silverman is a 2023 CEED Summer Fellow and rising senior at Smith College, majoring in neuroscience.

Lived experience co-design of research refers to collaboration between researchers-by-training and people who are directly affected by the topic being studied. These individuals are sometimes referred to as peer researchers or experts-by-experience to acknowledge, value, and give credibility to the knowledge they can contribute to a research process. Co-design occurs at every stage of the research process, from study design to dissemination of results, and provides the given field of study with valuable perspectives on how research and clinical practice can best serve the people they impact.¹

The term was introduced in the 1970s and 1980s, then referred to as co-production, and relating to the involvement of people who use a public service in the production of that service. In Europe in the 1990s, co-production entered the healthcare context, focusing on building new services that centered on the values, needs, and autonomy of patients.¹

The United States Office of the Assistant Secretary for Planning & Evaluation has outlined some strategies for equitable co-design in research, practice, and policy. Among these are acknowledging systemic barriers and harms, centering those most affected by these injustices, compensating people for lived experience contributions, avoiding stigmatizing language, making engagement accessible, and recognizing and mitigating power dynamics.² 

UNC-Chapel Hill promotes co-design through the North Carolina Translational and Clinical Sciences Institute (NC TraCs), providing tools and recommendations for community and stakeholder engagement in research and facilitating partnerships between researchers and community organizations.CEED researchers have engaged community groups for both their Eating Disorders Genetics Initiative (EDGI) study (Black women with eating disorders and individuals with larger bodies who have eating disorders) and their Avoidant/restrictive food intake disorder-Genes and Environment (ARFID-GEN) study (parents of children with ARFID). These community groups helped researchers understand how best to create inclusive environments for these communities and to understand what research questions were most important to the community members. Given the history of stigma associated with psychiatry and concerns about genetic research, involving stakeholders in this work is essential for people with lived experience to gain trust and develop ownership in the research process.³

In many eating disorders research centers around the world, strides have been made to thoughtfully incorporate co-design into research projects and initiatives. At the Australian Eating Disorders Research and Translation Centre (AEDRTC), co-design is at the forefront, guiding research and research translation across the country. In addition to a stream that focuses on lived experience co-design more broadly,⁴ the AEDRTC promotes Indigenous leadership in the eating disorder field by building partnerships with First Nations communities. Guided by consultant Ms. Leilani Darwin, the Aboriginal and Torres Strait Islander Co-Production Program was created to address gaps in eating disorder care experienced by Indigenous people, and works towards the development of culturally-attuned assessment tools and treatment methods designed specifically for this population.^5,6 Ms. Shannon Calvert serves as a Lived Experience Advisor to the center as part of her overall mission to provide lived-experience wisdom to Australia’s future roadmap in mental health.

At the University of Edinburgh in Scotland, Dr. Fiona Duffy, Ellen Maloney, and Emy Nimbley are calling for leadership in the research process by people with lived experience. Their paper, “A call for autism-led research exploring definitions of recovery in autistic individuals with an eating disorder,” emphasizes that integrating participatory research practices may lead to better recovery outcomes and the development of novel treatments that value the autonomy of autistic people with eating disorders.⁷ Work toward the development of these treatment interventions is already underway in Dr. Kate Tchanturia’s lab at King’s College London, where The Pathway for Eating Disorders & Autism Developed from Clinical Experience (PEACE) project combines clinical expertise and lived experience perspectives to inform approaches to therapeutic practice.⁸

The examples above give only a small snapshot of the co-design efforts currently underway in the field of eating disorders and beyond. As we look into the future, we must strive to represent a wide range of lived experiences in our work, ensure that we are budgeting time and funding to working directly with experts-by-experience, and weaving co-design into the fabric of everything we do.

References

1.    Silvola, S., Restelli, U., Bonfanti, M., & Croce, D. (2023). Co-Design as enabling factor for patient-centred healthcare: A bibliometric literature review. ClinicoEconomics and Outcomes Research : CEOR, 15, 333–347. https://doi.org/10.2147/CEOR.S403243

2.    Guerrero Ramirez, G., Amos, L., McCallum, D., Bradley, K., Wheatley, N., Ruggiero, R., McKinney, T., Baumgartner, S., De Leon, R., Girouard, H., McMahon, J., Sutton, W., Erickson, L., Benton, A. (2023). What Does it Look Like to Equitably Engage People with Lived Experience? Office of the Assistant Secretary for Planning and Evaluation. https://aspe.hhs.gov/reports/equitably-engage-people-lived-experience

3.    MacDermod, C., Pettie, M. A., Carrino, E. A., Garcia, S. C., Padalecki, S., Finch, J. E., Sanzari, C., Kennedy, H. L., Pawar, P. S., Mcgough, M. M., Iwashita, A., Takgbajouah, M., Coan, D., Szakasits, L., Goode, R. W., Wu, Y. K., Reyes-Rodríguez, M. L., Vacuán, E. M. T. C., Kennedy, M. A., Cleland, L., … Bulik, C. M. (2022). Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies. American Journal of Medical Genetics. Part B, 189(5), 163–173. https://doi.org/10.1002/ajmg.b.32906

4.    Australian Eating Disorders Research and Translation Centre (2022). Lived Experience and Co-Production Stream. https://www.eatingdisordersresearch.org.au/stream/lived-experience-and-co-production/

5.    Australian Eating Disorders Research and Translation Centre (2022). Aboriginal and Torres Strait Islander Eating Disorders Co-Production Stream. https://www.eatingdisordersresearch.org.au/stream/aboriginal-and-torres-strait-islander-co-production/

6.    Australian Eating Disorders Research and Translation Centre (2022). Key Thinkers Forum: Eating Disorders, Wellbeing and a need for Research. https://www.eatingdisordersresearch.org.au/events/2022-01-22-research-centre/

7.    Nimbley, E., Maloney, E., & Duffy, F. (2023). A call for autism-led research exploring definitions of recovery in Autistic individuals with an eating disorder. International Journal of Eating Disorders, 10.1002/eat.23953. Advance online publication. https://doi.org/10.1002/eat.23953

8.    Tchanturia, K., Smith, K., Glennon, D., & Burhouse, A. (2020). Towards an Improved Understanding of the Anorexia Nervosa and Autism Spectrum Comorbidity: PEACE Pathway Implementation. Frontiers in Psychiatry, 11, 640. https://doi.org/10.3389/fpsyt.2020.00640