Addiction Mission PSP protocol

Contents

Published: 15 July 2024

Version: 1

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Purpose of the PSP and background

The purpose of this protocol is to clearly set out the aims, objectives, and commitments of the Addiction Mission Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles. The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group will review the Protocol regularly and any updated version will be sent to the JLA.

The JLA is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in PSPs. These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, carers and clinicians. The National Institute for Health and Care Research (NIHR) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Coordinating Centre (NIHRCC), University of Southampton.

The Addiction Mission, Office of Life Sciences, and key stakeholders agreed that it was important to gain a better understanding of the health and social needs of all people with addictions, to identify key uncertainties regarding harm reduction, treatment and recovery of addictions from the perspective of those who are expert by experience, and professionals.  This is to ensure they get the appropriate support and treatment they require and the key questions are researched and answered. The Addiction Mission approached the James Lind Alliance to set up a Priority Setting Partnership to identify the key unanswered or inadequately answered questions about the health of those with addictions.

The Addiction Mission is working with the James Lind Alliance to develop a Priority Setting Partnership to enable clinicians, those people with lived/living experience of addictions or who use alcohol or drugs problematically, carers and families to work together to identify and prioritise research priorities. These priorities will be available for a range of funding bodies to inform their strategy regarding funding. More information about the scope of the Addiction Mission is below. (We are aware of the numerous terms used for those people experiencing addictions, and for this purpose we will use people with lived/living experience of/or addiction or people with lived/living experience of drug and alcohol problems.)

Aims, objectives and scope of the PSP

The Addiction Mission is aiming to enhance the UK-wide research environment and incentivise the development and testing of innovative and effective new treatments, technologies, and approaches to support recovery, and reduce the harm and deaths these addictions can cause.

The aim of the Addiction Mission PSP is to identify the unanswered questions about the health and social care of people with lived/living addictions in any settings or context (e.g. hospital care, community, primary care, criminal justice setting, recovery settings) suggested by those people experiencing addiction, by carers and families and from clinical perspectives and then prioritise those that all agree are the most important for research to address.

The objectives of the PSP are to:

  • work with people experiencing addiction, carers, families and clinicians and advocates of individuals to identify uncertainties about all aspects of addictions: uncertainties about harm reduction, treatments now, aspects of recovery and new innovative treatments regarding mental health and psychological/ pharmacological treatments, to agree by consensus a prioritised list of those uncertainties for research
  • to publicise the results of the PSP and process
  • to take the results to research commissioning bodies to be considered for funding.

The scope of the Addiction Mission PSP is defined as:

  • To consider all aspects of physical and mental health, (covering the full range of mental health including neurodiversity) and wellbeing of any persons experiencing addictions and their families, covering all age groups from adolescents to older age groups.
  • Within scope is addiction to those substances that people may access treatment services for support. These would include: alcohol, opiates (illicit, synthetic opioids and including problematic use of prescription medication and/or where it requires opiate substitution medication), benzodiazepines and gabapentinoids, stimulants (cocaine/crack, amphetamine, methamphetamine), others such as GHB, ketamine, new emerging drugs, cannabis including synthetic cannabinoids, etc. It also includes poly substance use, including alcohol.
  • The scope would not include:
    • smoking cessation services for tobacco/nicotine including vaping.
    • behavioural addictions such as gambling or gaming.
    • Primary prevention (prevention of initiation of substances)
  • Further, it is also appreciated that the majority of individuals accessing treatment to addiction services will have substantial mental and physical health challenges. Individuals presenting to an addiction service may have a range of other needs such as housing, education and childcare and some are involved with criminal justice system. It is also important that research priorities account for such complex and intersecting needs.

The Steering Group is responsible for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.

The Steering Group

The Steering Group includes membership of people with experience of addiction, carers and families and clinicians, as individuals or representatives from a relevant group.

The Addiction Mission PSP will be led and managed by a Steering Group involving the following:

People with addiction experience /representatives

  • Viv Evans, ADFAM rep on families
  • Representative from Change Grow Live.
  • Jessica Murray
  • Deborah Craig
  • Declan Roughan
  • Rachael Bannister, Melinda King (Royal College of Psychiatrists)
  • Larry Eve
  • Dot Smith
  • Michaela Jones (Scotland)
  • Tim Sampey
  • John Elford

Clinical Representatives

  • Catriona Matheson
  • Anne Campbell (NI)
  • Emily Finch, Representative from the Royal College of Psychiatrists, UK
  • Ed Day, UK recovery champion
  • Steve Brinksman, Addictions Professionals and Cranstoun
  • Luke Mitcheson, Psychology
  • Linda Harris, Primary care and Criminal Justice
  • Danny Hames, NHS APA
  • Stuart Green

Charity Representatives

  • Justina Murray, Representative from Scottish families affected by Drugs and Alcohol
  • Harpreet Kohli, Representative from Scottish Health Action on Alcohol problems (SHAAP)
  • Representative from Collective Voice Awaiting confirmation

Government Representatives

  • Rhian Hills, Representative from the Wales Substance Misuse Policy, Government and Corporate Business

PSP Leadership

PSP Lead: 

  • Professor Eilish Gilvarry 

Office for Life Sciences, Addiction Mission

  • Professor Anne Lingford-Hughes, Chair of Addiction Mission (PSP Deputy Lead)
  • Dr Tom Dalliston, Head of Addiction Mission
  • Erinn Melville, Senior Policy Advisor

James Lind Alliance Adviser and Chair of the Steering Group: 

  • Toto Gronlund, James Lind Alliance

Information specialist:

  • Kristina Staley, Information Specialist

Project coordinator:

  • Preeti Beri, James Lind Alliance

The Steering Group will agree the resources, including time and expertise that they will be able to contribute to each stage of the process, with input and advice from the JLA.

Partners

Organisations and individuals will be invited to be involved with the PSP as partners. Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP. Partners represent the following groups:

  • people who have had lived/living experience of addiction difficulties in all settings
  • carers of people who have living /lived experience of addictions in all settings
  • health and social care, third sector professionals.

Exclusion criteria

Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.

The methods the PSP will use

This section describes a schedule of proposed steps through which the PSP aims to meet its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods used in any step will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details of the method are in the Guidebook section of the JLA website where examples of the work of other JLA PSPs can be seen.

Step 1: Identification and invitation of potential partners

Potential partner organisations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the Addiction Mission PSP.

Step 2: Awareness raising

The PSP will need to raise awareness of its proposed activity among people with living/lived experience of addiction, carers and families, and clinician communities, in order to secure their support and participation. Depending on budget, this may be done by a face-to-face meeting, or there may be other ways in which the process can be launched, e.g. via social media. It may be carried out as part of steps 1 and/or 3. The Steering Group should advise on when to do this. Awareness raising has several key objectives:

  • to present the proposed plan for the PSP
  • to generate support for the process
  • to encourage participation in the process
  • to initiate discussion, answer questions and address concerns.

Step 3: Identifying evidence uncertainties

The Addiction Mission PSP will carry out a consultation to gather uncertainties from people with lived/living experience of addiction (this will include those attending services and those if possible, who are not in service, either discharged, left service or having difficulties with access), carers, families and clinicians. A period of 2 months will be given to complete this exercise (which may be revised by the Steering Group if required).

The Addiction Mission PSP recognises that the following groups may require additional consideration. These include but not limited to people from ethnic minorities, LGBTQ groups, veterans, women, older groups, those not in treatment or left treatment early, or having barriers to access. The Steering Group should consider the nature of the groups that it is targeting, their needs and how to reach potentially seldom heard or marginalised communities.

The Steering Group will use the following methods to reach the target groups:

  • Online surveys
  • Face to face consultations with individuals/ focus groups where groups are unlikely to access or have access to the internet.

Existing sources of evidence uncertainties may also be searched. Please indicate which, if any, are being included, for example question-answering services for patients and carers and for clinicians; research recommendations in systematic reviews and clinical guidelines; protocols for systematic reviews being prepared and registers of ongoing research.

Step 4: Refining questions and uncertainties

The consultation process will produce ‘raw’ questions and comments from people with experience of addiction, carers and clinicians, indicating areas for uncertainties. These raw questions will be categorised and refined by Kristina Staley into summary questions which are clear, addressable by research, and understandable to all. Similar or duplicate questions will be combined where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. The Steering Group will have oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences. The JLA Adviser will observe to ensure accountability and transparency.

This will result in a long list of in-scope summary questions. These are not research questions and to try and word them as such may make them too technical for a non-research audience. They will be framed as researchable questions that capture the themes and topics that people have suggested.

The summary questions will then be checked against evidence to determine whether they have already been answered by research. This will be done by Kristina Staley. The PSP will complete the JLA Question Verification Form, which clearly describes the process used to verify the uncertainty of the questions, before starting prioritisation. The Question Verification Form includes details of the types and sources of evidence used to check uncertainty. The Question Verification Form should be published on the JLA website as soon as it has been agreed to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this.

Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by Kristina Staley. This will show the checking undertaken to make sure that the uncertainties have not already been answered. The data should be submitted to the JLA for publication on its website on completion of the priority setting exercise, considering any changes made at the final workshop, in order to ensure that PSP results are publicly available.

The Steering Group will also consider how it will deal with submitted questions that have been answered, and questions that are out of scope.

Step 5: Prioritisation – interim and final stages

The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties about all aspects of addiction; harm reduction, treatment and recovery, barriers to treatment, and issues relating to families and carers, in all settings. This will involve input from people experiencing addiction, carers/families, and clinicians. The JLA encourages PSPs to involve as wide a range of people as possible, including those who did and did not contribute to the first consultation. There are usually two stages of prioritisation.

  1. Interim prioritisation is the stage where the long list of questions is reduced to a shorter list that can be taken to the final priority setting workshop. This is aimed at a wide audience and is done using similar methods to the first consultation. With the JLA’s guidance, the Steering Group will agree the method and consider how best to reach and engage people experiencing addiction, carers, families, and clinicians in the process. The most highly ranked questions (around 25) will be taken to a final priority setting workshop. Where the interim prioritisation does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forward to the final prioritisation.

  2. The final priority setting stage is generally a one-day workshop facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 people with experience of addictions, carers and clinicians will be recruited to participate in a day of discussion and ranking, to determine the top 10 questions for research. All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.

Dissemination of results

The Steering Group will identify audiences with which it wants to engage when disseminating the results of the priority setting process, such as researchers, funders, and the networks of people with experience of addictions, and clinical communities. They will need to determine how best to communicate the results and who will take responsibility for this. Previous PSPs’ outputs have included academic papers, lay reports, infographics, conference presentations and videos for social media.

It should be noted that the priorities are not worded as research questions. The Steering Group should discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by Professor Eilish Gilvarry and Professor Anne Lingford-Hughes.

The JLA encourages PSPs to report back about any activities that have come about because of the PSP, including funded research. Please send any details to jla@soton.ac.uk.

Agreement of the Steering Group

The Addiction Mission PSP Steering Group agreed the content and direction of this Protocol in July 2024.