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Introduction Researchers are increasingly being asked to include patient engagement in their research programs. Some organizations , such as the UK-based Involve [1], have begun to organize approaches to engage patients in research. This article provides a perspective on front-line involvement of a patient and caregiver in a research project focused on integrated care. My name is Frank Hanson and I have been diagnosed with multiple chronic medical issues. I have been married to my caregiver Rhene for over 50 years and we are both in our seventies. In this article we offer our perspective as patient and caregiver advisors engaged in the multi-year iCOACH (implementing Integrated Care for Older Adults with Complex Health needs) research project. Based on our experience thus far, we have provided some suggestions for including patients and caregivers more effectively. We also share a few of our thoughts and suggestions after several decades of navigating our way through the Ontario health care system. Participating as a Patient and Caregiver in a Research Project We were first engaged as participants in a small research study that included interviews with patients aged 65 and over living with multiple chronic conditions, as well as their caregivers and physicians, to ask about goals of care [2-4]. We were subsequently asked to participate in future research, and we agreed. After a meeting with the Principal Investigator to discuss what was being asked of us, we were pleased to participate as patient and caregiver advisors. We have been recipients of many benefits of the health care system, and this venue provides a way of "giving back" to society. This research also provides an opportunity for us to share experiences and help improve the health care system for others. We hope to further advocate for the patients' interest and ensure accountability, providing a practical perspective to the research study. We have participated as the sole patient and caregiver representatives in quarterly meetings with the overall team of iCOACH investigators. There have also been two three-day, in-person study team meetings. From time to time we are called upon to share our thoughts with the team, usually on specific areas that involve the patient/caregiver experience. We have also provided direct feedback on patient and caregiver surveys and interview guides used by the team. How to Ensure a More Successful Engagement of Patients and Caregivers on a Research Team The experience for all parties has been a continuous learning curve and is evolving. Although our experience has been mostly positive, there have been a number of challenges. This is an entirely new experience for us and there has been much to learn in order just to participate. It has also been a challenge for the professional researchers to engage lay people in their research. We offer here some suggestions for ways to improve the present platform to become more meaningful. At the outset of the study, we felt that we could not fully participate in team meetings because w...

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Aim: Minimum Pricing for Alcohol (MPA) was enacted in Wales on March 2nd 2020. During the legislative process (i.e. consultation and parliamentary discussion), concern was expressed about the possibility of some drinkers switching to using other substances in response to any rise in the cost of alcohol. This paper reports on findings from a study which explored these pre-implementation concerns and how the policy was shaped. Method: The research involved surveys (n=193) and interviews (n=87) with drinkers (predominantly harmful or treatment seeking) and providers of services. Survey responses were detailed, thus when combined with the interviews, provided a wealth of qualitative data, which are drawn upon in this paper. Results: The findings highlight an expectation that most drinkers would respond to the new policy with adaptations of their coping mechanisms to maintain alcohol use at pre-legislative levels. This was either by switching alcohol products and adjusting their lifestyle to maintain an affordable drinking habit or developing new behaviours to manage additional costs. A small group of those with previous experience of drug use were identified as likely to switch from using alcohol to some other substances. Conclusions: Prior to the legislation being implemented awareness of the detail of the policy was found to be low, and the perceptions of increased potential harm for certain groups, including switching, were linked to concern about a lack of treatment capacity.

There is widespread support for the introduction of Drug Consumption Rooms (DCRs)in Scotland as part of a policy response to record levels of drug-related harm. However, existing legal barriers are made more complex by the division of relevant powers between the UK and Scottish Governments. This paper reports on a national, qualitative study of key decision-makers in both local and national roles across Scotland. It explores views on the political barriers and enablers to the adoption of Drug Consumption Rooms and the potential role of these facilities in the wider treatment system. It also considers approaches to evidence, especially the types of evidence that are considered valuable in supporting decision-making in this area. The study found that Scottish decision-makers are strongly supportive of DCR adoption; however, they remain unclear as to the legal and political mechanisms that would make this possible. They view DCRs as part of a complex treatment and support system rather than a uniquely transformative intervention. They see the case for introduction as sufficient, on the basis of need and available evidence, thus adopting a pragmatic and iterative approach to evidence, in contrast to an appeal to traditional evidence hierarchies more commonly adopted by the UK Government.