Oral Presentation Cancer Survivorship Conference 2023

Beyond engagement and involvement: Solidarity as a tool to support lived experience leadership (#24)

Brett Scholz 1
  1. Australian National University, Acton, ACT, Australia

There has been a growing emphasis on ensuring people with lived experience are part of health system decision-making. The sector is starting to understand the importance of developing and delivering health policy, health services, health research and health education. This makes me feel optimistic – we know initiatives led by people with lived experience are more relevant to service users, are more trustworthy, and lead to more effective uses of resources.

 

Unfortunately, there are several barriers to true partnerships with people with lived experience in health organisations. These include:

  • Paradigm shift. Mainstream health professionals have traditionally been ‘the’ experts in health. Partnership with people with lived experience in developing policy, services, research and education requires the sector to adopt a new and sometimes uncomfortable paradigm that values experiential expertise in the same way it has valued health disciplinary knowledge.
  • Lack of guidance. Many clinicians I talk to say they want to partner with people with lived experience. Often, though, current guidelines are limited to engaging or involving people with lived experience. ‘Easy’ guidance is lacking for approaches that truly move beyond engagement or involvement to partnership or leadership models.
  • Co-option of participatory approaches. As we see co-production and co-design flourish, we see a lot more tokenism. There is an increasing number of claims about initiatives being co-designed without any evidence that they truly have been.

 

In this talk, I draw on two intersecting research streams – (i) lived experience leadership in the health sector, and (ii) allyship to support lived experience leadership. I discuss how recent developments in lived experience leadership should give us confidence that lived experience is truly appreciated. However, solidarity is a resource we are going to need to ensure that we move through this participatory era in a way that avoids tokenism, and that truly values lived experience.