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23/148 Lived experience recovery organisations

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Published: 07 November 2023

Version: 1.1 October 2023

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Research Area of Interest

  • Exploration and mapping of Lived Experience Recovery Organisations (LEROs) – at all stages of development, from those emerging to those that are established – to understand the type and reach of the organisation
  • Evaluation established LEROs and their (cost) effectiveness in reducing harm, supporting engagement in treatment and sustaining recovery

Dame Carol Black’s independent review of drugs identified a gap in the evidence on the effectiveness of peer-led interventions and how these can be encouraged and facilitated by the treatment system. The 10-year government drug plan committed to address this gap.

A LERO is an independent organisation led by people with lived experience of drug and alcohol recovery. LEROs deliver a range of harm reduction interventions, peer support and recovery support, and help people to access and engage in treatment and other support services. LEROs therefore operate within systems of care to support the delivery of treatment and recovery, and should work with other treatment and recovery support services within communities. Lived experience can be defined as personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people. Of course, people with lived experience often have a blend of lived and learned experience. LEROs are informed by a primary relationship with their community and act in response to the needs and aspirations of their community, recognising and employing the assets and competencies that already exist. There are currently 33 LEROs in England working in at least 40 Local Authorities.

The Office of Health Improvement and Disparities (OHID) has published guidance to support alcohol and drug treatment and recovery partnerships to understand the evidence for, value of and ways to develop lived experience initiatives and recovery support services. These initiatives and services help individuals and their families sustain recovery long term. This guidance:

  • introduces recovery, peer support and lived experience initiatives
  • outlines the evidence for and current provision of recovery support services in England, based on a rapid evidence review and a 2022 survey of English local authority commissioners
  • outlines how to develop systems of care that support recovery

Most of the research on recovery support services comes from the US and there are some differences between how treatment is funded and delivered in England and the US. The line between treatment and recovery support service provision is more blurred in England than in the US. Alcohol and drug treatment services in England are contracted to offer some recovery support service elements. In the US, recovery support services are typically peer-led, standalone services. In the UK, the understanding and provision of recovery support services is variable. Findings from lived experience research have the potential to be helpful to people in their recovery journeys.

LEROs provide interventions in a range of settings aiming to reduce alcohol  and drug – related harm including supporting people at high risk of death, engaging with hospitals and other partners to improve care and pathways into support, and building wider recovery awareness and support in the community. By having a more direct connection to local neighbourhoods and communities, they aim to be a key resource for keeping partnerships in touch with local residents and ensuring support is accessible to all. Evidence of the impact and cost-effectiveness of LEROs is lacking.

The Public Health Research (PHR) Programme wishes to commission research on the effectiveness of LEROs in reducing harm, supporting engagement in treatment and sustaining recovery. The PHR Programme is predominantly interested in the effectiveness of interventions at a population/group level rather than at an individual level, and research should address health inequalities and the wider determinants of health. The programme recognises that LEROs will also impact at an individual level and would accept outcomes at an individual level as part of a population level study. The Programme also recognises that LEROs are likely to impact different (sub)populations in different ways and encourages researchers to explore differential impact in their study design.

Study designs

A range of study designs and outcome measures can be used. Researchers will need to clearly describe and justify their choice of health and other outcomes, target population group, as well as the rationale for their methodological approach. This could include measures of ‘recovery capital’ including personal (such as physical and mental health, employment, education and training and housing status), social (such as accessing and giving peer support, and supportive family and friends) and community (such as being part of recovery communities). Researchers are encouraged to consider additional outcome measures including those relating to the broader determinants of health and health inequalities, which should be specified and justified. Researchers will also need to specify key outcomes and how these will be measured in the short, medium and long term.

Providing value to the economy and community 

Understanding the value of public health interventions – whether outcomes justify their use of resources – is integral to the PHR Programme, where resources relating to different economic sectors and budgets are potentially relevant. The main outcomes for economic evaluation are expected to include health (including health-related quality of life) and the impact on health inequalities as a minimum, with consideration of broader outcomes welcomed. Different approaches to economic evaluation are encouraged as long as they assess the value and distributive impact of interventions. Applications that do not include an economic component should provide appropriate justification.

It is expected that applicants to this call will involve LEROs in the design and undertaking of any study, and that remuneration will be appropriate for the work undertaken by the LEROs. Researchers are strongly encouraged to ensure that people with lived experience from the target audience (including those who and do not access treatment and recovery support services) are meaningfully involved in the design and planning of the research and/or as potential, suitably rewarded and supported members of the research team. Researchers should demonstrate the relevance of their proposed research to decision-makers, commissioners and people with lived experience, and they might do this through involving them as costed/rewarded/supported members of the research team. Researchers are encouraged to explain how they will share their findings with policy makers, public health officers, special interest groups, treatment and recovery service providers, LEROs, charities, community audiences and other relevant stakeholders. Researchers are expected to be aware of other studies in this area, development in practice and ensure their proposed research is complementary.

Further information 

Applicants are welcome to contact the NIHR Public Health Research Applications and Design Advice (PHRADA), to support the development of their proposals.

To find out more on how to submit an application to the PHR Programme, please refer to the Stage 1 guidance notes and PHR supporting information