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ObjectivesThe experiences of people who report cost-related medicine non-adherence are not well documented. We aimed to present experiences relating to accessing medicines reported by the participants in a randomised controlled trial of free medicine distribution.MethodsThe trial consisted of primary care patients from a large urban family practice and three rural family practices who reported cost-related medicine non-adherence. Participants were randomly allocated to continue their poor access (control) or to receive free and easily accessible medicines (intervention). As part of data collection for the first year of the trial, participants were asked closed and open-ended questions to assess their adherence to medication, health outcomes and their experiences in relation to medicine accessibility. We conducted a qualitative concept mapping study in which we analysed and summarised participants’ responses to the open-ended question on a concept map to visually present their experiences relating to accessing medicines.ResultsOf the 524 trial participants contacted, 198 (38%) responded to the open-ended question. The concept map contains clusters that represent eight types of experiences of participants related to medicine access including stress, relationship with doctor, health impact, quality of life, sacrificing other essentials, medicines are expensive, financial impact and adherence. These experiences fall under two major themes, experiences relating to personal finances and experiences relating to well-being, which are bridged by a central cluster of adherence.ConclusionsThe experiences shared by the participants demonstrate that access to medicines impacts people’s finances and well-being as well as their adherence to prescribed medicines. These results indicate that effects on personal finances and general well-being should be measured for interventions and policy changes aimed at improving medicine access.Trial registration numberThis article is linked to the Carefully Selected and Easily Accessible at No Charge Medicines (CLEAN Meds) randomised controlled trial (trial registration number: NCT02744963).

Objective To determine the acceptability of providing free access to only a short list of medicines used in the Carefully seLected and Easily Accessible at No charge Medications (CLEAN Meds) trial.Design A multimethod explanatory sequential design including interviews with trial participants and focus groups with prescribers. Setting Ontario.Participants Participants in the intervention arm of the CLEAN Meds trial and primary care providers who prescribed medicines to those in the intervention arm of the trial. Main outcome measuresThe number of trial participants in each prescription category (ie, prescribed no off-list medicine, prescribed 1 off-list medicine, or prescribed 2 or more off-list medicines) and the acceptability of the list to both participants and prescribers.Results There were 395 participants in the intervention group of the CLEAN Meds trial, but 16 participants withdrew consent or were not prescribed any medicines during the first 12 months of the trial, resulting in a total of 379 participants in the quantitative component of this study. Of the 2648 total prescriptions, 2349 (89%) were for medications that were on or had an equivalent covered by the list. Random sampling was used to select 5 participants to interview from each prescription category. A total of 19 prescribers participated in the focus groups. Themes from participant interviews included the following: having access to medicines on the list was a relief, participants trusted health care professionals to switch medicines and to decide which medicines should be on a publicly funded list, and a short list of essential medicines should be publicly funded. Major themes from the prescribers' focus groups related to the process of developing the list, support for the list, and publicly funding a short list of essential medicines in Canada. ConclusionThe consensus among trial participants and prescribers is that the short list of medicines used in the trial is comprehensive and provides access to medicines commonly prescribed.This article has been peer reviewed. Cet article a fait l'objet d'une révision par des pairs.

Background: Healthcare organizations are increasingly exploring ways to address the social determinants of health. Accurate data on social determinants is essential to identify opportunities for action to improve health outcomes, to identify patterns of inequity, and to help evaluate the impact of interventions. The objective of this study was to refine a standardized tool for the collection of social determinants data through cognitive testing. Methods: An initial set of questions on social determinants for use in healthcare settings was developed by a collaboration of hospitals and a local public health organization in Toronto, Canada during 2011-2012. Subsequent research on how patients interpreted the questions, and how they performed in primary care and other settings led to revisions. We administered these questions and conducted in-depth interviews with participants from Saskatchewan, Manitoba, Ontario, and Newfoundland and Labrador. Cognitive interviewing was used, with participants invited to verbalize thoughts and feelings as they read the questions. Results: Three hundred and seventy-five individuals responded to the study advertisements and 195 ultimately participated in the study. Although all interviews were conducted in English, participants were diverse. For many, the value of this information being collected in typical healthcare settings was unclear, and hence, we included descriptors for each question. In general, the questions were understood, but participants highlighted a number of ways the questions could be changed to be even clearer and more inclusive. Conclusion: In this work we have refined an initial set of 16 sociodemographic and social needs questions into a simple yet comprehensive 18-question tool. The changes were largely relating to wording, rather than content. These questions require validation against accepted, standardized tools. Further work is required to enable community data governance, and to ensure implementation of the tool and well as use of its data is successful in a range of organizations.