Public and patient involvement
We involved public contributors throughout this study in order to ensure research relevance, quality and accountability strengthen research rigour.72
Our aim was to include people with experience of opioid addiction, as drug users or with a close connection to someone who used drugs. We identified individuals with experience of opioid addiction through family relationships, voluntary networks or individual circumstances. We involved them in designing the study proposal and in delivering the commissioned research. When designing this study, we sought the views of different groups linked to opioid use. When developing and designing the study we met with third-sector workers and individuals using a drug service, to discuss attitudes and experiences relating to overdose, THN and the proposed research. We also worked closely with individuals with experience within their family of opioid overdose who drew on personal experience to highlight the relevance of the research questions and comment on data collection methods and selection of outcomes. We wanted to be sure the research would be feasible so explored whether it seemed relevant and coherent to them and how likely people would be to take part. We also gained insight into personal experiences of overdose and THN, including how they perceived the services which respond to emergency overdose calls. These contacts enabled us to gain people’s views on the research question and the proposed methods. We also discussed how we could involve individuals in delivering the research and identified individuals and support groups interested in maintaining a relationship with the study team. The people we were in touch with gave their active support to the research aim to reduce death from opioid overdose. One was named a study co-applicant.
Throughout the process of delivering the TIME trial, we followed our intention to work closely with people with personal experience of opioid addiction and overdose. We sought their input to all stages of research implementation, oversight and dissemination.
Our public contributor co-applicant was a TMG member and included in all meeting discussions and communication. Her experience in relation to opioid overdose, which contributed to her commitment to the research, also interrupted her ability to routinely attend research meetings. We recognised her personal commitments. When domestic responsibilities limited her ability to attend meetings, the public and patient involvement (PPI) lead met with her at another convenient time to discuss project progress and obtain her feedback. We discussed other ways she could contribute to the study and agreed she would give comments and feedback by e-mail between meetings.
We wanted to supplement involvement in delivering the study by creating a second, more accessible route for linking with people with relevant experience. We recognised and had been advised by people we talked to when planning the study, that it would be challenging for people to join a formal research team meeting. We identified the Sheffield Addiction Research Recovery Panel (ShARRP), which is a group of people with experience of dependent/problematic drug and alcohol use, either personally or as carer, partner or relative of someone. Selected team members met periodically with ShARRP. The team members reported study progress and sought comments, suggestions and relevant experience from Panel members to inform research implementation. Through this route they also identified individuals to attend TMG meetings, to speak from the insight provided by membership of ShARRP.73 These individuals joined some meetings but were not able to consistently attend, so the ShARRP meetings provided a useful supplement to accessing individuals and gaining feedback.
Personal commitments and circumstances made it difficult for any individual to sustain their involvement for the full study period. While the research team made regular efforts to involve people with relevant experience and enable their contributions, we did not have the opportunity to build long-term relationships.74,75 However, we minimised the lack of continuity by meeting public contributors in their settings and groups. Hearing their stories reinforced for us the challenging circumstances of experiencing, or associating with, opioid addiction.76
We also recruited two public contributors to join the TSC to provide experience-based expertise alongside input from members with academic, clinical and methodological skills. They were involved in all the TSC meetings. We recruited these individuals through the Public Involvement Community in Wales supported by Health and Care Research Wales and through networks known to the study team. They had relevant experience and also skills which enabled them to be active members of the TSC.
We supported all public contributors in line with the UK Standards for Public Involvement.72 We offered honoraria and reimbursement of all expenses. We sought flexible routes to seek public contributions and communicate with individuals with relevant experience. We named a co-applicant as PPI lead, who was supported by other team members able to use their skills and geographic location for this aspect of our collaboration. We have reported our experiences in line with best practice.77
Equality, diversity and inclusion
The methods of participant recruitment for this study did not proactively target specific groups, but maintained an equitable approach. Due to the nature of this project, participants are often marginalised and from deprived socioeconomic backgrounds. We offered an honorarium to all people we invited to be involved as public contributors and provided access to a free Citizens Advice Bureau-supported helpline for advice on claiming this.