Abstract
Plain English summaryThe purpose of this paper is to describe a patient engagement event designed to create an educational workbook with smokers who drink alcohol at harmful levels. The goal was to create a workbook that combined scientific evidence with patients’ values, preferences, and needs. Fourteen adult smokers who drink alcohol were invited to the Centre for Addiction and Mental Health (CAMH) to take part in a four-hour event to help design the workbook with the CAMH research team. Participants provided their opinions and ideas to create an outline for the workbook, including activities, images, and titles. The workbook – called Self-Awareness – is currently being offered in a smoking cessation program in 221 primary care clinics across Ontario to help smokers quit or reduce their harmful alcohol use. The patient engagement event was a useful way to co-create educational materials that incorporate both scientific research and patient needs.BackgroundEvidence-based medicine is the integration of best research evidence with clinical expertise and patient values. There are few methodologies on how to design evidence-based programs and resources to include patient values. The latter is an important aspect of patient-centered care, and is essential for patients to trust the recommendations and empower them as consumers to make informed choices. This manuscript describes a participatory research approach to design patient-facing educational materials that incorporate both evidence-based and community-sensitive principles. These materials are intended to support smokers to reduce or stop harmful alcohol consumption.MethodsAdult smokers who report consuming alcohol were invited to a co-creation meeting at the Centre for Addiction and Mental Health’s Nicotine Dependence Service to guide the adaptation of evidence-based materials. The four-hour event consisted of individual reflections, group discussions, and consensus-building interactions. Detailed notes were taken and then incorporated into the material.ResultsFourteen individuals participated in the event. The end product was a descriptive outline of an educational resource – entitled Self-Awareness – incorporating material from evidence-based workbooks and patient-driven features. Participants collaboratively selected the resource’s content, structure, and titles.ConclusionsThis model describes a participatory research method that emphasizes the value of the patient perspective; preliminary evidence finds this adaptation approach can increase the adoption of resources. The process described in this article could be replicated in other settings to co-create evidence-based resources, interventions, and programs that reflect the needs of the community.Trial registrationClinicalTrials.gov NCT03108144. Retrospectively registered 11 April 2017.
Highlights
Evidence-based medicine is the integration of best research evidence with clinical expertise and patient values
Participants collaboratively selected the resource’s content, structure, and titles. This model describes a participatory research method that emphasizes the value of the patient perspective; preliminary evidence finds this adaptation approach can increase the adoption of resources
The process described in this article could be replicated in other settings to co-create evidence-based resources, interventions, and programs that reflect the needs of the community
Summary
Evidence-based medicine is the integration of best research evidence with clinical expertise and patient values. There are few methodologies on how to design evidence-based programs and resources to include patient values. The latter is an important aspect of patient-centered care, and is essential for patients to trust the recommendations and empower them as consumers to make informed choices. This manuscript describes a participatory research approach to design patient-facing educational materials that incorporate both evidencebased and community-sensitive principles. These materials are intended to support smokers to reduce or stop harmful alcohol consumption. Researchers have shown that the terms “evidence-based medicine” and “patient-centered medicine,” are seldom used by the same authors, [6] and that there is a need for “evidence-based medicine to be more patient-centered .... (and) patient-centered medicine to be more evidence-based.” To-date, most of evidencebased medicine has focused on methods for conducting thorough systematic reviews and for reducing bias in clinical trials, [7] with little attention paid to the third concept – patient/community-centered strategies necessary for true evidence-based medicine [5, 6, 8, 9]
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