Public Engagement in Health Policy-Making for Older Adults: A Systematic Search and Scoping Review.

INTRODUCTION: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy-making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy-making for older adults. METHODS: A systematic search of peer-reviewed and grey literature (English only) describing public engagement initiatives in health policy-making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. RESULTS: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy-making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation-type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. CONCLUSION: This review describes how public engagement practices have been conducted to help inform health policy-making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. PATIENT OR PUBLIC CONTRIBUTION: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults.

"Getting to the Table": Changing Ideas about Public and Patient Involvement in Canadian Drug Assessment.

CONTEXT: Involving patients and the public in health policy may contribute to legitimacy and accountability. However, tensions may arise between paradigms of scientific-evidence-based decision making and new ideas valuing inclusivity and patient experience when evaluating and allocating health resources. This article asks whether 10 years of experience with public and patient involvement in Canadian drug assessment has affected participants' ideas about how it works. METHODS: The author surveyed the ideas of participants in the drug assessment process (members of expert committees, officials, and patient groups) as described in reports and hearings in 2005, 2007, and 2012 and conducted interviews in 2014 and 2016. FINDINGS: The author found some consensus across groups of participants regarding the broad goals of health technology assessment (HTA) and the validity of some form of public and patient involvement. There were also important areas of disagreement and uncertainty about how public and patient involvement should be used in drug assessment and how much impact it has on deliberations and recommendations. Overall, uncertainly about the specific role for public and patient involvement in HTA limits the potential for ideational change among participants. CONCLUSIONS: These findings have implications for evaluation of public and patient involvement, the way we understand ideational change, and practical questions of communicating health resource decisions.

Universal prescription drug coverage in Canada: Long-promised yet undelivered.

Canada's universal public healthcare system is unique among developed countries insofar as it does not include universal coverage of prescription drugs. Universal, public coverage of prescription drugs has been recommended by major national commissions in Canada dating back to the 1960s. It has not, however, been implemented. In this article, we extend research on the failure of early proposals for universal drug coverage in Canada to explain failures of calls for reform over the past 20 years. We describe the confluence of barriers to reform stemming from Canadian policy institutions, ideas held by federal policy-makers, and electoral incentives for necessary reforms. Though universal "pharmacare" is once again on the policy agenda in Canada, arguably at higher levels of policy discourse than ever before, the frequently recommended option of universal, public coverage of prescription drugs remains unlikely to be implemented without political leadership necessary to overcome these policy barriers.

How the pace of change affects the scope of reform: pharmaceutical insurance in Canada, Australia, and the United kingdom.

When policy change is considered, what determines its success or failure? Why do plans for broad reforms often fall short, and why do certain types of change become more difficult over time? This article addresses these questions by examining health policy development in Canada, Australia, and the United Kingdom - specifically, why Canada alone failed to adopt nationwide, public pharmaceutical insurance. It demonstrates that the pace of change has significant implications for the scope of policy development. It provides new mechanisms to explain why incremental reforms stall based on the reciprocal relationship between elite ideas and public expectations and suggests that similar factors can explain how barriers to policy change develop and the conditions under which those barriers may be overcome.

(Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time.

How do experts judge the legitimacy of technical policy processes, and do their ideas change as these processes are opened to other stakeholders and the public? This research examines the adoption of public and patient involvement in pharmaceutical assessment in Canada. It finds tensions between scientific legitimacy that prioritizes rigor and objectivity, and democratic legitimacy that values inclusion and a broader range of evidence. In response to policy change, experts incorporate new ideas about democratic inputs and processes, while maintaining scientific policy goals. The research responds to calls for more precise measurement of ideas and ideational change and more evaluation of public and patient involvement in health policy. It helps us understand the significance of, and limits to, ideational change among experts in health policy domains that are highly technical and publicly salient. Understanding the way democratic and scientific legitimacy are negotiated in policy decisions has a wide applicability in health, but is particularly relevant during a global pandemic when evidence is being generated rapidly, decisions must be made quickly, and these decisions have a significant, immediate effect on the lives of all citizens.

Expression of the neuroprotective slow Wallerian degeneration (WldS) gene in non-neuronal tissues.

BACKGROUND: The slow Wallerian Degeneration (Wld(S)) gene specifically protects axonal and synaptic compartments of neurons from a wide variety of degeneration-inducing stimuli, including; traumatic injury, Parkinson's disease, demyelinating neuropathies, some forms of motor neuron disease and global cerebral ischemia. The Wld(S) gene encodes a novel Ube4b-Nmnat1 chimeric protein (Wld(S) protein) that is responsible for conferring the neuroprotective phenotype. How the chimeric Wld(S) protein confers neuroprotection remains controversial, but several studies have shown that expression in neurons in vivo and in vitro modifies key cellular pathways, including; NAD biosynthesis, ubiquitination, the mitochondrial proteome, cell cycle status and cell stress. Whether similar changes are induced in non-neuronal tissue and organs at a basal level in vivo remains to be determined. This may be of particular importance for the development and application of neuroprotective therapeutic strategies based around Wld(S)-mediated pathways designed for use in human patients. RESULTS: We have undertaken a detailed analysis of non-neuronal Wld(S) expression in Wld(S) mice, alongside gravimetric and histological analyses, to examine the influence of Wld(S) expression in non-neuronal tissues. We show that expression of Wld(S) RNA and protein are not restricted to neuronal tissue, but that the relative RNA and protein expression levels rarely correlate in these non-neuronal tissues. We show that Wld(S) mice have normal body weight and growth characteristics as well as gravimetrically and histologically normal organs, regardless of Wld(S) protein levels. Finally, we demonstrate that previously reported Wld(S)-induced changes in cell cycle and cell stress status are neuronal-specific, not recapitulated in non-neuronal tissues at a basal level. CONCLUSIONS: We conclude that expression of Wld(S) protein has no adverse effects on non-neuronal tissue at a basal level in vivo, supporting the possibility of its safe use in future therapeutic strategies targeting axonal and/or synaptic compartments in patients with neurodegenerative disease. Future experiments determining whether Wld(S) protein can modify responses to injury in non-neuronal tissue are now required.

Pharmaceutical policy reform in Canada: lessons from history.

Canada is the only country with a broad public health system that does not include universal, nationwide coverage for pharmaceuticals. This omission causes real hardship to those Canadians who are not well-served by the existing patchwork of limited provincial plans and private insurance. It also represents significant forgone benefits in terms of governments' ability to negotiate drug prices, make expensive new drugs available to patients on an equitable basis, and provide integrated health services regardless of therapy type or location. This paper examines Canada's historical failure to adopt universal pharmaceutical insurance on a national basis, with particular emphasis on the role of public and elite ideas about its supposed lack of affordability. This legacy provides novel lessons about the barriers to reform and potential methods for overcoming them. The paper argues that reform is most likely to be successful if it explicitly addresses entrenched ideas about pharmacare's affordability and its place in the health system. Reform is also more likely to achieve universal coverage if it is radical, addressing various components of an effective pharmaceutical program simultaneously. In this case, an incremental approach is likely to fail because it will not allow governments to contain costs and realize the social benefits that come along with a universal program, and because it means forgoing the current promising conditions for achieving real change.