Eight principles for involving people with living and lived experience in addiction research

Members of the Addictions Patient and Public Involvement and Engagement (APPIE) network share their advice about how researchers can collaborate with people with living and lived experience of addiction.

Bringing people with living and lived experience of substance use and addictive behaviours into research teams is a core activity of the National Institute for Health and Care Research (NIHR) Policy Research Unit in Addictions. We do this through our Patient and Public Involvement and Engagement (PPIE) network – the ‘APPIE network’. The APPIE network involves over 90 people with living or lived experience of illicit drugs, alcohol, tobacco, vaping, nicotine, and gambling.

People in the APPIE network are passionate about using their experiences to improve research. The following principles from the APPIE network can help to ensure that research is ethical, meaningful, and ultimately beneficial for those it seeks to help.

1. ‘Nothing about us without us’

This phrase is well-recognised, and its power should not be underestimated. People have a right to be involved in publicly funded projects that affect them (including research). In the APPIE network, we always treat people with the same respect, agency, and freedom as we would treat any other researcher or member of our team. People with living and lived experience also form our strategy group which is core to our network. Strategy group members help us align our actions to the UK Standards for Public Involvement and ensure that people with experience of substance use and addictive behaviours are at the heart of all the work we do.

2. Trust and transparency

People with living or lived experience may have prior negative experiences of institutions or organisations. Creating trust and transparency is vital. We do this through: inviting people with living and lived experience into the decision-making processes around our research; sharing our PPIE strategy publicly and offering people who are new to the network ‘welcome information’ and a chance to talk with us one-to-one about opportunities to get involved; thanking people for their contributions to our work and sharing our successes; and also being honest about factors that limit our ability to take everyone’s views into account.

3. Choice and flexibility

We have found that people with living and lived experience are more likely to get involved in research if we provide flexibility and choice surrounding the opportunity. This means offering people different ways to engage (e.g. through virtual or in-person options), and allowing them to choose the level of involvement that works best for them. In the APPIE network, we also offer people with living and lived experience choice regarding how they would like to be reimbursed for their contributions (e.g. bank transfers to their own accounts or nominated accounts, vouchers, and charity donations).

4. Valuing people

People with living and lived experience offer invaluable insights that go beyond data, bringing personal knowledge that enriches both projects and teams. Valuing our network members is an essential principle to building connections and becoming a supportive community. Although people in the APPIE network receive payment for their time, they are also valued through non-monetary exchanges. For example, we have recently launched a bi-directional mentoring scheme which pairs researchers with network members so that both partners can learn something new about the topics they are interested in.

5. Listening (no, really LISTENING)

It is important that people with living and lived experience have opportunities to share their views in meaningful ways. To empower everyone with confidence to speak up, we provide time at the end of meetings for additional comments from those who have been quieter during the meeting and encourage further thoughts by email. We also show that we have listened by providing feedback, including evidence of how we have changed our research based on what people have shared with us.

6. Challenging stigma

One of the key reasons people experiencing problems with substance use and other behaviours will not seek help or support is stigma. It is something that a person can carry with them for many years. One way we attempt to minimise stigma is by changing how we talk about addiction and by promoting each person’s right to self-define. This means being thoughtful in our use of language and not imposing our own terminology on others. Within the APPIE network, we start each meeting with a reminder about our ‘4 Cs’: confidentiality, communication, consideration, and contribution.

7. Respecting other people’s perspectives

Things may look different and convey different meanings depending on the position from which they are being viewed. Creating an environment where different perspectives are acknowledged and respected is fundamental for meaningful involvement and participation. Within the APPIE network, we always consider what might happen when we bring people with divergent views together and we arrange PPIE groups accordingly. Having people with diverse personal experiences in one space can be productive, but sometimes people feel more comfortable discussing sensitive topics in small groups with other people in similar situations to themselves.

8. Equality, diversity, and inclusion

Involving people from different backgrounds is necessary to ensuring our research is relevant to and benefits the whole population. The APPIE network is constantly seeking to engage with a range of community groups to be inclusive of age, race, ethnicity, ancestry, and sexuality etc. We offer support with technology for those who do not have access to the internet, computers, or smart phones, and can pay for carers or childcare to encourage involvement by people with family responsibilities. Importantly, we do not wait for people to approach us. We proactively talk about who we are and what we do so that others can ask questions and consider joining us.

by Abigail Severn, Paul Lennon, Mel Getty, and Joanne Neale