Join us behind the scenes for reflections, best practices and impact stories from author teams, Geographic Groups, and others involving patients and the public in Cochrane activities.
This month we’re doing something a little different! In celebration of our 2025 review, we’re sharing the full interview with Ailsa Butler. Ailsa is an author of two Cochrane reviews Interventions for quitting vaping and E-cigarettes for smoking cessation.
First up, we asked Ailsa about the review, Interventions for quitting vaping.
Why was consumer involvement* a priority for this review?
Involving stakeholders helps us to design research that is meaningful and useful, so that we are investigating what matters most to people. Vapes are relatively new product and although vaping is significantly less harmful than smoking, it is not risk free, therefore research is needed on how best to support people to quit vaping. Healthcare professionals and people who use nicotine vapes want to know about how to quit vaping, and for people with histories of smoking, how to do so without risk of relapse to smoking.
We consider consumer involvement to be crucial to ensure that we address the questions that are most useful to consumers and to decision makers. It is important that clear and accurate information should be available so that people can make informed choices. There are still uncertainties surrounding vapes and interventions to help quitting and how long people continue to use vapes. In relation to interventions to help people to quit vaping evidence is only beginning to emerge with ongoing trials that will provide information over the next few years.
"By involving people who use nicotine vapes and healthcare professionals, we ensure our research addresses real concerns such as how to quit vaping safely without increasing the risk of returning to smoking."
At what stages of the review did you involve consumers? Could you share an example where consumer input influenced the review approach or interpretation?
We involved consumers at the planning and protocol preparation stage and continue to seek input at each stage of our project. We ask for involvement and input via focus groups and surveys, we have a core group of public contributors and a patient and public involvement (PPI) project co-applicant. Early feedback meant that we changed the proposed title of our review to use the term ‘vape’ instead of ‘electronic cigarette’. Consumers were interested in the effect of stopping vaping on weight and alcohol use so we included change in weight and alcohol use between baseline and longest follow up as important outcomes alongside our other outcomes.
Our stakeholder/consumer consultation highlighted that people were overwhelmingly interested in change in tobacco cigarette use and whether people would go back to smoking. Other topics of particular interest to consumers were interventions using nicotine tapering, in different settings (e.g. schools) and among different age groups. We have also consulted on dissemination and have received useful feedback and input on ways of sharing information such as length and frequency of our briefing documents, the use of infographics and social media. We ask for regular input on briefing documents and our monthly podcasts to make sure that we are communicating clearly. So, on our project we have received input to help shape the research at the outset, to clarify the questions, and to improve how we communicate our findings.
"We involve consumers throughout via focus groups, surveys and a PPI core group. In response to consumer feedback we use the term ‘vape’ instead of ‘e-cigarettes’ in our title and have added important outcomes to the review."
In your view, what impact has – or will – consumer involvement in your research have on decision-makers who use your review?
Our stakeholder involvement means that we are asking and answering questions that useful and relevant to stakeholders including people who use vapes and decision makers. There is policy interest in our Interventions for quitting vaping review, notably in relation to the Tobacco and Vapes Bill, and we have fed into two consultation stages in 2025 and will submit further information to the consultations being held in 2026. We present findings at meetings and scientific conferences, and have links with policy partners Action on Smoking and Health and the UK Department of Health & Social Care. Publication of the Interventions for quitting vaping review in 2025 was covered by 38 news outlets (e.g. BBC Science Focus Magazine, The Conversation, Daily Mail, The Telegraph, The Guardian, The Mirror). By synthesizing current evidence on interventions to support vaping cessation we aim for the findings of this review to inform public understanding and policy development.
Next, we turned to the second review on E-cigarettes for smoking cessation review.
Why was consumer involvement a priority for this review?
A stakeholder engagement project related to tobacco control in 2016 led by co-author Nicola Lindson, found that e-cigarettes/vapes were the highest priority topic. Stakeholder feedback underlined the need to gather and assess the growing body of evidence and throughout we have involved consumers so that we are addressing the most important questions.
Smoking is the leading preventable cause of disease and death in the UK and our review aims to improve the knowledge surrounding the use of vapes as a stop smoking tool to assist the development of evidence-based stop smoking policies based on accurate and evolving information.
Led by Nicola Lindson and Jamie Hartmann-Boyce, this review synthesizes evidence on both the knowns and unknowns of vaping and smoking cessation. Our review critically appraises the evidence to help inform decision-making by people who smoke or vape, as well as the policymakers and healthcare professionals who support them.
“Ongoing consumer involvement helps us to make sure that the review remains focused on generating accurate, people-relevant, and policy-relevant evidence on the use of vapes as stop smoking tools.”
At what stages of the review did you involve consumers? Could you share an example where consumer input influenced the review approach or interpretation?
Consumer involvement on the subject of tobacco control highlighted that vapes were the highest priority topic in 2016 (Lindson 2017). Since the E-cigarette for smoking cessation review transitioned into a living review in 2020 we continue to seek input and have held many patient public involvement focus groups and online surveys. Surveys have asked for feedback on the scope of our review and optimum methods for sharing information, the usefulness of the review, dissemination materials and future of the living review. Survey respondents were people who used combustible cigarettes, people providing stop smoking support, researchers, members of relevant charities or advocacy groups and policy makers.
Stakeholder consultation highlighted that people were interested in finding out whether people would continue to use vapes longer term after using them as a quit smoking tool. This led to an amendment to review protocol to include the outcome to assess the number of people still using the study product (E-cigarette or pharmacotherapy) at longest follow‐up (at least 6 months). Other topics of interest to consumers identified were the role of flavours and levels of biological markers of harm in people using E-cigarettes/vapes to quit combustible cigarettes.
In your view, what impact has—or will—consumer involvement in your research have on decision-makers who use your review?
Our E-cigarettes for smoking cessation review has been cited in over 30 guidelines, we have presented our findings to healthcare bodies and at international conferences. The review findings have been reported by news outlets (e.g. BBC, Channel 4 the Economist, the Guardian, New York Times). Information from our review fed into the Khan review, Making smoking obsolete, NICE guidelines, and the 2024 Royal College of Physicians report, ‘E-cigarettes and harm reduction: An evidence review’.
Stakeholder feedback has underlined the need to gather and assess the growing body of evidence including, from people with experience of tobacco/nicotine use. A quote from a survey responder: “In a world filled with fake news and disinformation, Cochrane is one of few trusted sources that accurately reflects the state of science on vaping.” Consumer involvement means that we are addressing questions of relevance; for example whether vapes are a helpful stop smoking tool and whether people continue to use them longer term. We continue to work with our policy partners to feed our findings in to health policy debate and decision making. For example, senior author, Jamie Hartmann-Boyce sits on the Vaping Scientific Advisory Board for Health Canada, has provided expert testimony to NICE, and been invited to present findings to the WHO
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*Please note, the term “consumer involvement” is used here, as Cochrane reviews are asked to report on consumer involvement. ‘Consumers’ may include researchers, health care providers, patients and members of the public, or other professionals, such as policy makers or commissioners.
