Why we should conduct research in collaboration with people who use alcohol and other drugs

Neale, Joanne; Bouteloup, Annabel; Getty, Mel; Hogan, Cassandra; Lennon, Paul; Cusker, Martin Mc; Strang, John

doi:10.1111/add.14015

Cited by 16 publications

(15 citation statements)

References 14 publications

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“…Trial information does not have to be provided only via dense documents and formal information sheets delivered by researchers or clinicians. It can also be made available via informal media (such as video or social media) using accessible language and images which potential participants can view at the recruitment sites and elsewhere; enhanced consent forms or extended discussion during the consenting process ; or interactive events hosted jointly with opioid users (including those who have already participated in similar trials) as part of a collaborative research effort .…”

Section: Discussionsupporting

confidence: 66%

Improving recruitment to pharmacological trials for illicit opioid use: findings from a qualitative focus group study

et al. 2018

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AimTo explore potential study participants’ views on willingness to join clinical trials of pharmacological interventions for illicit opioid use to inform and improve future recruitment strategies.DesignQualitative focus group study [six groups: oral methadone (two groups); buprenorphine tablets (two groups); injectable opioid agonist treatment (one group); and former opioid agonist treatment (one group)].SettingsDrug and alcohol services and a peer support recovery service (London, UK).ParticipantsForty people with experience of opioid agonist treatment for heroin dependence (26 males, 14 females; aged 33–66 years).MeasurementsData collection was facilitated by a topic guide that explored willingness to enrol in clinical pharmacological trials. Groups were audio‐recorded and transcribed. Transcribed data were analysed inductively via Iterative Categorization.FindingsParticipants’ willingness to join pharmacological trials of medications for opioid dependence was affected by factors relating to study burden, study drug, study design, study population and study relationships. Participants worried that the trial drug might be worse than, or interfere with, their current treatment. They also misunderstood aspects of trial design despite the researchers’ explanations.ConclusionsRecruitment of participants for clinical trials of pharmacological interventions for illicit opioid use could be improved if researchers became better at explaining clinical trials to potential participants, dispelling misconceptions about trials and increasing trust in the research process and research establishment. A checklist of issues to consider when designing pharmacological trials for illicit opioid use is proposed.

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Section: Discussionsupporting

confidence: 66%

Improving recruitment to pharmacological trials for illicit opioid use: findings from a qualitative focus group study

et al. 2018

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“…It is important to develop and evaluate resources that enhance the health literacy and capacity of non‐government AOD services to address the physical health of clients and link them with primary health care. Collaborative research that engages the AOD workforce and service users would mitigate the risk of developing tools or strategies that lack clinical utility or feasibility for use in the real‐world community settings [45]. Given some clients reported negative experiences with health‐care providers that were not identified by staff, services should seek regular feedback from clients regarding their experiences with external providers.…”

Section: Discussionmentioning

confidence: 99%

Facilitators and barriers to integrating physical health care during treatment for substance use: A socio‐ecological analysis

Osborne

Kelly

Robinson

et al. 2020

Drug and Alcohol Review

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Introduction and Aims Clinical practice guidelines recommend physical health be addressed when treating substance use disorders. Yet, the integration of alcohol and other drug (AOD) treatment and physical health care is seldom actualised. This is particularly the case in the non‐government sector. Using the socio‐ecological model as a framework, this study aimed to examine the facilitators and barriers to integrating physical health in non‐government AOD services. Design and Methods Interviews were conducted with residential and outpatient AOD services across New South Wales, Australia. Qualitative data were collected from service users (n = 20) and clinicians (n = 13). Interview data were transcribed then systematically coded and analysed using iterative categorisation. Results Most staff recognised physical health care as a fundamental component of treatment for substance use even when there were personal, professional and structural barriers for doing so. Service users reported a diverse range of health and social benefits when physical health care was incorporated in to AOD treatment. An exception to this was some negative experiences with health‐care providers that were not identified by staff. Discussion and Conclusions Findings highlight the importance of developing resources to enhance the health literacy and capacity of non‐government AOD services to address the physical health of clients. Given some clients reported negative experiences with health‐care providers that were not identified by staff, services should seek regular feedback from clients regarding their experiences with external providers. The effectiveness of existing and new physical health initiatives within non‐government organisation AOD services needs more formal evaluation.

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“…There are examples of this type of work in the UK (see, for example, the work of the Scottish Drugs Forum) and it is being actively promoted in major journals in the drug field (see Neale et al . ).…”

Section: Discussionmentioning

confidence: 97%

“…It might also enhance the credibility of drug users' expertise allowing it to play a more central role in policymaking and avoid being dismissed as anecdotal. There are examples of this type of work in the UK (see, for example, the work of the Scottish Drugs Forum) and it is being actively promoted in major journals in the drug field (see Neale et al 2017).…”

Section: Discussionmentioning

confidence: 99%

Experts, Expertise and Drug Policymaking

Monaghan

Wincup

Wicker

2018

Howard J Crime Justice

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Over the past two decades, policymakers have been encouraged to develop evidence‐based policies in collaboration with experts. Drug policy is unique since it has an established inbuilt mechanism for soliciting expertise via the Advisory Council for the Misuse of Drugs (ACMD). Increasingly alternative mechanisms have been used. Based upon detailed analysis of two case studies of drug policymaking using alternative methods to solicit expertise, we argue that the framing of the policy problem, the mechanisms used to involve experts and the type of evidence actively sought, have continued to marginalise the involvement of the drug user in policymaking.

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Why we should conduct research in collaboration with people who use alcohol and other drugs

Abstract: Collaborative research is more than a list of involvement activities; it is a mindset requiring receptiveness to new ideas, trust, respect, effort and resources. There are utilitarian, ethical, epistemological and consequentialist arguments for taking the time to do it well.

Cited by 16 publications

References 14 publications

Improving recruitment to pharmacological trials for illicit opioid use: findings from a qualitative focus group study

Improving recruitment to pharmacological trials for illicit opioid use: findings from a qualitative focus group study

Facilitators and barriers to integrating physical health care during treatment for substance use: A socio‐ecological analysis

Experts, Expertise and Drug Policymaking

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