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Background Rapid ethical access to personal health information (PHI) to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences. Methods A total of 183 patients in the pandemic cohort completed the survey via email, and responses were compared to the distinct pre-pandemic cohort (n = 222); all were patients of a large Canadian cancer center. The survey covered (a) broad versus study-specific consent; (b) opt-in versus opt-out contact approach; (c) levels of comfort sharing with different recipients; (d) perceptions of commercialization; and (e) options to track use of information and be notified of results. Four focus groups (n = 12) were subsequently conducted to elucidate reasons motivating dominant preferences. Results Patients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples (90% vs. 79%, p = 0.009), sharing information with the health care institution (97% vs. 83%, p p . 53%, p p = 0.022) and internationally (48% vs. 39%, p = 0.024) compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts (50% vs. 51% uncomfortable, p = 0.58). Significantly more pandemic cohort patients expressed a wish to track use of PHI (75% vs. 61%, p = 0.007), and to be notified of results (83% vs. 70%, p = 0.012). Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved. Conclusions In pandemic times, patients were more comfortable sharing information with all parties, except with commercial entities, where levels of discomfort (~ 50%) remained unchanged. Focus groups identified that the ability to track and receive results of studies using one’s PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises.

Pharmaceuticals are the focus of increased scrutiny by public insurers. Between 1985 and 1998, drug expenditure in Canada increased by 226% - approximately double the increase in total expenditure on health. Prescribed and non-prescribed drugs now comprise the second-largest share of health care expenditures after hospitals, surpassing physicians’ services. The National Forum on Health called for common strategies across the provinces, to manage pharmaceuticals from a health policy perspective. At the same time, the federal government and several provinces are interested in promoting pharmaceutical research and development (R&D), as part of the advancement of a knowledge-based economy. In the past, debates about pharmaceutical policy centred on the balancing of cost-containment and access to needed pharmaceuticals. The creation of an environment more conducive to attracting pharmaceutical R&D introduces additional tensions that will, no doubt, require concessions in current policies to manage pharmaceutical expenditures. In addition, a significant R&D investment will have predictable “downstream” effects on other sectors, such as academic research. In this study, we describe the experience of 7 Western industrialized countries in controlling pharmaceutical budgets while maintaining access to medically necessary prescription medications. In addition, we describe the potential impact of these policies on pharmaceutical R&D and the efforts of these countries to create a favourable climate for fostering R&D within their borders. We identify tensions that arise between health policy and industrial policy goals, and broad questions of directions and choices.

In 1997, the Canadian National Forum on Health recommended creation of a national pharmacare program, the key elements of which would include: (a) universal first-dollar coverage for medically necessary medications; (b) comprehensive information support tools for managers, clinicians, and consumers to guide in the optimal use of pharmaceuticals; (c) integration with primary care reform; and (d) innovative methods for management of costs. This recommendation has generated considerable controversy, position papers by various system stakeholders, and a national conference to debate alternative approaches to pharmacare. In an attempt to clarify some of the confusion in the context of the ongoing debate, we describe the nature of existing public prescription drug insurance coverage, and review what is known about private coverage in Canada. We focus, in particular, on provincial prescription drug plans, documenting the extent of variation in coverage across the provinces, and trends in this coverage in recent years. In addition, we have assessed the impact of the various cost-sharing provisions on a typical senior residing in the different provinces, using a series of simulations to calculate what the out-of-pocket costs would have been for a high- or low-income senior in each province under alternative scenarios regarding prescription drug consumption and the senior’s income. The elderly are among the most consistently covered groups within society. Although all provincial drug benefit programs have some coverage for seniors, there is substantial variation in the amount of coverage. This study reveals a substantial burden of out-of-pocket costs associated with an average drug consumption pattern. In addition, among seniors of similar income, we see up to a ten-fold variation in out-of-pocket payments for the same drug consumption among the provinces. In most provinces, the trend in the last decade has been toward greater cost-sharing. This reverses the trend observed between the 1960’s and 1990. With the exception of Quebec, which recently introduced a universal system of coverage (accompanied by significant increases in cost-sharing for those previously covered), recent extensions of coverage have tended to be piecemeal, to individuals with specific diseases or requiring specific drugs. As a consequence of the last thirty years of pharmacare policy, the availability of prescription drug insurance depends more on such factors as employment status and the type of employment, province of residence, age, and income than it does on underlying need for such therapy.