The Addictions Patient and Public Involvement and Engagement (APPIE) network has established eight key principles for involving people with personal experience in addiction research. Comprising over 90 individuals with lived experience of illicit drugs, alcohol, tobacco, vaping, nicotine, and gambling, the network provides valuable guidance for researchers seeking meaningful collaboration.

Why Lived Experience in Addiction Research Matters

People in the APPIE network are passionate about using their experiences to improve research. Their eight principles help ensure that research is ethical, meaningful, and ultimately beneficial for those it seeks to help. These guidelines represent a framework developed by those who understand the challenges of substance use and addictive behaviours firsthand.

The Eight Core Principles

1. ‘Nothing About Us Without Us’

This well-recognised phrase highlights that people have a right to be involved in publicly funded projects that affect them, including research. The APPIE network treats people with living and lived experience with the same respect, agency, and freedom as any other researcher or team member. People with lived experience form the network’s strategy group, helping align actions to UK Standards for Public Involvement.

2. Trust and Transparency

People with lived experience in addiction research may have prior negative experiences with institutions or organisations, making trust-building vital. The APPIE network creates transparency by inviting people into decision-making processes, sharing their PPIE strategy publicly, offering welcome information and one-to-one discussions for newcomers, thanking contributors, and being honest about limitations.

3. Choice and Flexibility

The network has found that people with lived experience are more likely to engage when provided with flexibility and choice. This includes offering different engagement methods (virtual or in-person options) and allowing people to choose their preferred level of involvement. Payment options also vary, including bank transfers to personal or nominated accounts, vouchers, and charity donations.

4. Valuing People

People with lived experience in addiction research offer invaluable insights that go beyond data, bringing personal knowledge that enriches both projects and teams. While APPIE network members receive payment for their time, they’re also valued through non-monetary exchanges, such as the recently launched bi-directional mentoring scheme pairing researchers with network members for mutual learning.

5. Listening (No, Really LISTENING)

Meaningful opportunities for people with lived experience to share their views are essential. The network provides time at meeting ends for additional comments from quieter participants and encourages further thoughts via email. They demonstrate active listening by providing feedback and showing evidence of research changes based on shared experiences.

6. Challenging Stigma

Stigma is a key reason people experiencing substance use problems won’t seek help or support, and it can stay with someone for many years. The APPIE network attempts to minimise stigma by changing how they discuss addiction and promoting each person’s right to self-define. They use thoughtful language without imposing terminology on others, starting each meeting with reminders about their ‘4 Cs’: confidentiality, communication, consideration, and contribution.

7. Respecting Other People’s Perspectives

Different positions create different viewpoints and meanings. Creating environments where diverse perspectives are acknowledged and respected is fundamental for meaningful involvement. The network considers what happens when bringing people with divergent views together, arranging PPIE groups accordingly. While diverse personal experiences in one space can be productive, sometimes people feel more comfortable discussing sensitive topics in smaller groups with others in similar situations.

8. Equality, Diversity, and Inclusion

Involving people from different backgrounds ensures research relevance and benefits for the whole population. The APPIE network constantly seeks engagement with various community groups to be inclusive of age, race, ethnicity, ancestry, and sexuality. They offer technology support for those without internet access, computers, or smartphones, and can pay for carers or childcare to encourage involvement by people with family responsibilities. Importantly, they don’t wait for people to approach them—they proactively share information about their work so others can ask questions and consider joining.

Making Research More Meaningful

These principles demonstrate how lived experience in addiction research can be meaningfully incorporated into studies. The APPIE network’s approach shows that when people with personal experience of substance use and addictive behaviours are genuinely involved as partners rather than subjects, research becomes more relevant and beneficial.

The network operates as part of the National Institute for Health and Care Research (NIHR) Policy Research Unit in Addictions, where bringing people with living and lived experience into research teams is a core activity. Their comprehensive approach addresses practical barriers while ensuring that research maintains ethical standards and produces meaningful outcomes.

By following these eight principles, researchers can create more inclusive and effective studies that truly serve the communities they aim to understand. The APPIE network’s framework provides a practical roadmap for ensuring that lived experience in addiction research contributes to better understanding and improved outcomes for those affected by substance use and addictive behaviours.

Source: Addiction-SSA