Expertise or representation: What gives people with lived experience authority and legitimacy in involvement in research?

Le résumé fourni par la source

The involvement of people with lived experience makes research relevant and useful to the people it intends to help. How we conceptualise involvement influences every aspect of our approach to it. Over many years, the authors have sometimes witnessed or directly experienced problems caused by conceptualising involvement as being the same as (1) democracy, (2) stakeholder engagement, (3) qualitative research, or (4) “lay” engagement. We see these as distinct activities with different purposes to involvement. While representation (standing in for someone else) is important in these activities, we argue it is not required of people involved in research. We conceptualise involvement as a form of mutual learning. In particular, researchers learn from people’s experiential knowledge, which is knowledge based on the individual’s unique experience, but nonetheless similar to others. This knowledge becomes expertise because it enables people with lived experience to solve problems researchers have with their research. We therefore conclude that the success and quality of involvement depends on involving people with expertise that is relevant to the context. Our concern is that the authority and legitimacy of the contributions of people with lived experience is sometimes misunderstood to be dependent on their representativeness, rather than their expert knowledge. We have seen and experienced that this can lead to negative impacts on the research, and on the individuals involved, especially in terms of the emotional labour required to challenge researchers’ conceptualisations of involvement. We also note that practices to support diversity and inclusion can sometimes be confused with ensuring that an involved group is approaching statistical representation of a population. While we see these as different objectives, we believe all research-related activities need to be inclusive of diverse people. Overall we conclude that a greater understanding of the value of expertise based on experiential knowledge, would help take the onus off individuals to be representative, and give them the authority and legitimacy to speak on their own behalf. The responsibility for successful involvement then shifts to the wider research system to ensure that researchers are seeking, and adequately supporting the involvement of diverse people with relevant expertise. The involvement of people with lived experience makes research relevant and useful. How we think about involvement influences our approach to it. Over many years, the authors have sometimes witnessed or directly experienced problems caused by thinking involvement is the same as (1) democracy, (2) stakeholder engagement, (3) qualitative research, or (4) “lay” engagement. We believe these activities have different purposes to involvement. While representation (standing in for someone else) is important in these activities, we argue it is not required of people involved in research. We think about involvement as a way for researchers to learn from people’s experiential knowledge. This knowledge becomes expertise because people with lived experience can solve problems researchers have with their research. Our concern is that people’s contributions are sometimes questioned or even rejected, because they are seen not to be representative. This can negatively impact research and the people involved. We conclude that people’s expertise means they can speak on their own behalf. We also think it important that all research-related activities need to be inclusive of diverse people, which we see as different to making sure an involved group is somehow statistically representative of a population. We conclude that individuals involved in research should not need to try to be representative. Instead the wider research system could support successful involvement by ensuring that researchers are seeking, and adequately supporting the involvement of diverse people with relevant expertise.

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.