Lived experience leadership and systems transformation: what are we missing?

Author: Mark Loughhead, University of South Australia

Lived experience leadership in the context of health citizenship

Lived experience leadership is an emerging concept which shifts our long-standing paradigm of user involvement in health. Writing from the mental health space, it has emerged from the leadership demonstrated by consumers, survivors and users in advocacy work and in establishing peer organisations that provide alternatives or complementary supports to traditional mental health care.

Whereas user involvement occurs in the established context of health policy, and mostly in service environments, lived experience leadership recognises the expertise (for example knowledge of recovery, systems access, navigation) as well as the leadership of change that individuals and groups bring. This can occur inside the system, in terms of working in partnership with local health networks on service planning, or it can occur in community contexts, where leaders create local peer support groups, advocacy campaigns or other community organisation.

Lived experience leadership aligns well with health citizenship: in mental health and other areas such as harm reduction, and disability, leadership and self organisation emerges from a context of marginalisation and injustice, where leaders and citizens challenge systems and enduring perspectives that are ineffectual, stigmatising or harmful. It also aligns where leaders take a wholistic and intersectional approach to change, recognising that improved mental health requires a focus on social systems, participation, rights, roles and resources, not just treatment services. It also requires reshaping mindsets embedded in our cultures.

Evidence: we should take a broader view

There are multiple contexts of evidence directly connected with the impacts of lived experience leadership. Consider the outcomes of peer run organisations. The USA has a longstanding sector of consumer and family carer run organisations in mental health which report effective outcomes in peer support, social skills building, linking members to resources, family education, and service navigation skills. There are multiple peer programs in drug and alcohol mutual aid which have had life changing impacts for members. Innovative peer harm reduction initiatives have a significant history across European nations, Canada and Australia. HIV peer led health promotion is another context with an affirming evidence base.

Peer leaders navigate difficult contexts and challenges in maintaining organisations. These include social stigma, law reform, funding dilemmas, low resourcing, relationships with policy makers, meeting diverse needs, supporting members and mentoring new leaders. There is a struggle for recognition and legitimacy, yet effective leaders and collectives find a way to influence policy environments and offer service solutions which can better meet community needs and interests.

Transformation needs a collective effort

An area with the most challenges is the evidence from coproduced services. Achievement here is dependent on the quality and thoroughness of supports and genuine engagement practices provided by health agencies, the capabilities of all participants and partners, the quality of the design, its successful uptake, adoption and safeguarding as a new policy or model of care, and then its evaluation for consumer experience and health outcomes. The level of resourcing we need to evaluate the wider story and impact of coproduced work is significant, but it is possible using collaborative impact strategies, that identify key indicators of change along with the shifts needed to achieve them.

Many of us in the mental health space believe in the transformative power of lived experience. This is due to our own journeys, and the impacts of learning from others, and how relational aspects of support and care can mean the most for us. But it’s also about offering bigger picture solutions to shift long standing practices which are paternal, non accountable, one-sided, or unsafe, towards services which are collaborative, accountable, safe and useful. Lived experience leaders can be a catalyst, partner and safeguard for change, but systems level change needs the coordinated will, investment and action of leaders, governments, funders and professions, and shifts in policy, relationships, resource flows and narratives. In mental health, this means achieving a human rights focus in the design of systems, including removing models of substituted decision making, reframing user and practitioner relationships through supported decision making, and creating inclusive, person-centred service cultures.

Article: Loughhead M, Hodges E, McIntyre H, Procter NG, Barbara A, Bickley B, et al. A model of lived experience leadership for transformative systems change: Activating Lived Experience Leadership (ALEL) project. Leadership in Health Services 2022;36(1):9-23.
 

References

• Ashford, R.D., Brown, A., Canode, B., Sledd, A., Potter, J.S. and Bergman, B.G., 2021. Peer-based recovery support services delivered at recovery community organizations: Predictors of improvements in individual recovery capital. Addictive Behaviors, 119, p.106945.
• Chang J, Shelly S, Busz M, Stoicescu C, Iryawan AR, Madybaeva D, et al. Peer driven or driven peers? A rapid review of peer involvement of people who use drugs in HIV and harm reduction services in low- and middle-income countries. Harm Reduction Journal. 2021;18(1):15
• Brown G, Reeders D, Cogle A, Madden A, Kim J, O'Donnell D. A systems thinking approach to understanding and demonstrating the role of peer-led programs and leadership in the response to HIV and hepatitis C: Findings from the W3 project. Frontiers in Public Health. 2018;6:231.
• World Health Organization and the United Nations. Mental health, human rights and legislation: guidance and practice. Geneva, 2023.