Reported Challenges in Health Technology Assessment of Complex Health Technologies

ObjectivesWith complex health technologies entering the market, methods for health technology assessment (HTA) may require changes. This study aimed to identify challenges in HTA of complex health technologies.MethodsA survey was sent to European HTA organizations participating in European Network for HTA (EUnetHTA). The survey contained open questions and used predefined potentially complex health technologies and 7 case studies to identify types of complex health technologies and challenges faced during HTA. The survey was validated, tested for reliability by an expert panel, and pilot tested before dissemination.ResultsA total of 22 HTA organizations completed the survey (67%). Advanced therapeutic medicinal products (ATMPs) and histology-independent therapies were considered most challenging based on the predefined complex health technologies and case studies. For the case studies, more than half of the reported challenges were “methodological,” equal in relative effectiveness assessments as in cost-effectiveness assessments. Through the open questions, we found that most of these challenges actually rooted in data unavailability. Data were reported as “absent,” “insufficient,” “immature,” or “low quality” by 18 of 20 organizations (90%), in particular data on quality of life. Policy and organizational challenges and challenges because of societal or political pressure were reported by 8 (40%) and 4 organizations (20%), respectively. Modeling issues were reported least often (n = 2, 4%).ConclusionsMost challenges in HTA of complex health technologies root in data insufficiencies rather than in the complexity of health technologies itself. As the number of complex technologies grows, the urgency for new methods and policies to guide HTA decision making increases.     

A practice-based tool for engaging stakeholders in future research: a synthesis of current practices

ObjectiveA major goal of patient-centered outcomes and comparative effectiveness research is to increase the involvement of stakeholders throughout the research process to provide relevant and immediately actionable information. In this report, we review the current practices for engaging stakeholders in prioritizing research.Study Design and SettingTo evaluate the range of approaches to stakeholder engagement, we reviewed the relevant literature and conducted semistructured interviews with (1) leading research organizations in the United States, Canada, and the United Kingdom; and (2) eight Evidence-based Practice Centers that engage stakeholders in comparative effectiveness research.ResultsWe identified 56 articles related to stakeholder engagement in research prioritization. Studies and research organizations interviewed frequently used mixed methods approaches combining in-person venues with structured ranking or voting processes such as Delphi. EPCs similarly used group web/conference calls combined with Delphi ranking or voting. Research organizations reported difficulties engaging the public and policy makers, and EPCs reported challenges engaging federal stakeholders.ConclusionExplicit and consistent use of terminology about stakeholders was absent. In-person techniques were useful to generate ideas and clarify issues, and quantitative methods were important in the prioritization of research. Recommendations for effective stakeholder engagement and a reporting checklist were developed from the accumulation of findings.     

The role of health technology assessment on pharmaceutical reimbursement in selected middle-income countries

ObjectiveMiddle-income countries are often referred to as developing or emerging economies and face multiple challenges of severe financial stresses in their health care sectors, and high disease burden. The objective of this study is to provide an overview of how health technology assessment (HTA) is used and organized in selected middle-income countries and its role in the process of pharmaceutical coverage.MethodsWe selected middle-income countries where HTA activities are evident: Argentina, Brazil, China, Colombia, Israel, Mexico, Philippines, Korea, Taiwan, Thailand, and Turkey. We collected and reviewed relevant information to describe the health care and reimbursement systems and how HTA relates to coverage decision-making of pharmaceuticals. This was supplemented by information from a structured survey among professionals working in public and private health insurance, industry, regulatory authorities, ministries of health, academic units or HTA.ResultsAll countries require market authorization for pharmaceuticals to be sold and most countries have a national plan defining which pharmaceuticals can be reimbursed. However, the use of HTA in reimbursement decisions is still in its early stages with varying levels of HTA guidance implementation.ConclusionsThe study provides evidence of the development of HTA in coverage decision-making in middle-income countries. Increased health care spending and the resulting access to modern technology give a strong impetus to HTA. However, HTA is developing with uneven speed in middle-income countries and many countries are building on the organisational and methodological experience from established HTA agencies.     

State and Local Health Agency Engagement in HIE: A Cross-Sectional Survey

Objective

To characterize state and local health agency relationships with health information exchange organizations.

Introduction

There is growing interest in leveraging available health information exchange (HIE) infrastructures to improve public health surveillance (1). The Health Information Technology for Clinical and Economic Health Act and Meaningful Use criteria for electronic health record (EHR) systems are among the factors driving the development, adoption and use of HIEs. HIEs deliver or make accessible clinical and administrative data as patients are admitted, discharged, and transferred across hospitals, clinics, medical centers, counties, states and regions (2). While several HIE infrastructures exist (3), there is little evidence on the engagement in HIE initiatives by state and local health agencies.

Methods

An online survey of state and local health officials was conducted in six states where HIEs were known to be present. Half of the states were funded by the Centers for Disease Control and Prevention (CDC) to engage public health agencies in HIE activities; the other half received no such funding. A total of 143 officials were invited to participate; 73 (51%) responded. The survey asked respondents about their agencies awareness, engagement, and data exchange with HIEs. The survey further asked agencies about their perceptions of barriers and challenges to public health engagement with HIE organizations.

Results

Just 25% of agencies had a formal relationship, typically created through a memorandum of understanding or data usage agreement, with at least one nearby HIE. The majority (54%) of agencies either had no relationship (20%) or only an informal relationship (34%) with an HIE. The remaining agencies (18%) reported that no HIE existed in their jurisdiction. Agencies in states that had received CDC funding for HIE engagement were more likely (14 versus 2) to be formally partnered with an HIE.

Conclusions

Few public health agencies are formally engaged in HIE. Financial costs, human resources, and concerns regarding privacy/security were the top cited barriers to broader engagement in HIE. For public health to be an active participant in and reap the benefits of HIE, greater investment in state and local public health informatics capacity, including human resources, and education regarding HIE privacy and security practices are needed.     

A survey of Australian public attitudes towards funding of high cost cancer medicines

BackgroundIn the past decade many novel, and in some cases transformative, cancer medicines have entered the market. Their prices and the amount spent on them by governments have increased rapidly, bringing to the forefront trade-offs that must be made. In this paper we explore the Australian public’s attitude towards the funding of high cost cancer medicines (HCCM) to inform reimbursement and health technology assessment (HTA) policy.MethodsA survey consisting of 49 questions about the funding of HCCMs was developed by the investigators. Recruitment was conducted via Qualtrics. 1039 Australian adults completed the survey.ResultsThe Australian public overwhelmingly supports funding of HCCMs (95.5 %) to enhance equity of access (97.8 %), and to respond to patients’ needs (98 %). When respondents were challenged to balance equity versus access in different contexts inconsistencies emerged. Different demographic factors were important in predicting support for various strategies.ConclusionOur results suggest that the Australian public strongly supports government funding of HCCMs and values both equity and access. Equally, however, the public is uncertain about how equity and access are to be balanced and achieved, and such ambivalence needs to be both further explored and accommodated in policy processes. Our results may be used by policymakers in Australia, and countries with similar systems and values, to further develop policies and processes for funding HCCMs.     

How to identify,incorporate and report patient preferences in clinical guidelines: A scoping review

BackgroundClinical guidelines optimize care delivery and outcomes. Guidelines support patient engagement and adherence if they reflect patient preferences for treatment options, risks and benefits. Many guidelines do not address patient preferences. Developers require insight on how to develop such guidelines.ObjectiveTo conduct a scoping review on how to identify, incorporate and report patient preferences in guidelines.SearchWe searched MEDLINE, EMBASE, Scopus, CINAHL, OpenGrey and GreyLit from 2010 to November 2019.EligibilityWe included English language studies describing patient preferences and guidelines.Data extraction and synthesisWe reported approaches for and determinants and impacts of identifying patient preferences using summary statistics and text, and interpreted findings using a conceptual framework of patient engagement in guideline development.ResultsSixteen studies were included: 2 consulted patients and providers about patient engagement approaches, and 14 identified patient preferences (42.9%) or methods for doing so (71.4%). Studies employed single (57.1%) or multiple (42.9%) methods for identifying preferences. Eight (57.1%) incorporated preferences in one aspect of guideline development, while 6 (42.9%) incorporated preferences in multiple ways, most commonly to identify questions, benefits or harms, and generate recommendations. Studies did not address patient engagement in many guideline development steps. Included studies were too few to establish the best approaches for identifying or incorporating preferences. Fewer than half of the studies (7, 43.8%) explored barriers. None examined reporting preferences in guidelines.ConclusionsResearch is needed to establish the single or multiple approaches that result in incorporating and reporting preferences in all guideline development steps.     

Assessing the Electronic Evidence System Needs of Canadian Public Health Professionals: Cross-sectional Study

BackgroundTrue evidence-informed decision-making in public health relies on incorporating evidence from a number of sources in addition to traditional scientific evidence. Lack of access to these types of data as well as ease of use and interpretability of scientific evidence contribute to limited uptake of evidence-informed decision-making in practice. An electronic evidence system that includes multiple sources of evidence and potentially novel computational processing approaches or artificial intelligence holds promise as a solution to overcoming barriers to evidence-informed decision-making in public health.ObjectiveThis study aims to understand the needs and preferences for an electronic evidence system among public health professionals in Canada.MethodsAn invitation to participate in an anonymous web-based survey was distributed via listservs of 2 Canadian public health organizations in February 2019. Eligible participants were English- or French-speaking individuals currently working in public health. The survey contained both multiple-choice and open-ended questions about the needs and preferences relevant to an electronic evidence system. Quantitative responses were analyzed to explore differences by public health role. Inductive and deductive analysis methods were used to code and interpret the qualitative data. Ethics review was not required by the host institution.ResultsRespondents (N=371) were heterogeneous, spanning organizations, positions, and areas of practice within public health. Nearly all (364/371, 98.1%) respondents indicated that an electronic evidence system would support their work. Respondents had high preferences for local contextual data, research and intervention evidence, and information about human and financial resources. Qualitative analyses identified several concerns, needs, and suggestions for the development of such a system. Concerns ranged from the personal use of such a system to the ability of their organization to use such a system. Recognized needs spanned the different sources of evidence, including local context, research and intervention evidence, and resources and tools. Additional suggestions were identified to improve system usability.ConclusionsCanadian public health professionals have positive perceptions toward an electronic evidence system that would bring together evidence from the local context, scientific research, and resources. Elements were also identified to increase the usability of an electronic evidence system.     

Impact of health technology assessment implementation with a special focus on middle-income countries

ObjectivesBuilding an efficient health technology assessment (HTA) system requires significant effort and political commitment, in addition to human and financial resources. Expectations of what HTA can offer to middle-income countries (MICs) are continuously rising, which drives health policymakers to raise the question of whether HTA could help secure the financial sustainability needed to implement universal health coverage. In this study, we explored the impact HTA adoption may have on the countries and its impact on health system objectives, as well as transferability of benefits and drawbacks observed in higher-income to middle-income countries.MethodsWe utilized secondary data from a systematic literature review and primary data by disseminating a survey among local stakeholders in three MICs across three continents to capture their perspective on the impact of HTA implementation from a local context.ResultsIt was evident from the results of both the literature review and survey that the positive impacts of HTA implementation outweigh the negative impacts. Most of the reviewed literature discussed the impact of HTA on the intermediate objectives of the health finance policy in relation to the broad health system goals. According to the survey respondents, the most evident benefit of HTA implementation is improving the transparency and accountability of healthcare decisions.ConclusionsOverall, HTA implementation can introduce a myriad of benefits to healthcare systems in MICs as well. Our findings show that while HTA implementation may have the potential to generate cost savings in specific areas, there is no guarantee that HTA can generate savings at the macro level.Public Interest SummaryHealth technologies (medicines, devices, and interventions) are rapidly increasing in complexity and cost. Health Technology Assessment (HTA) guides healthcare decision-makers in choosing the most suitable, effective, affordable, and acceptable health technology to invest limited healthcare resources. However, healthcare decision-makers in middle-income countries (MICS) are still uncertain about whether adopting HTA would help them achieve the financial sustainability needed to achieve universal health coverage.Thereforewe sought to gather evidence on how HTA has affected the health systems of countries that have already adopted it by reviewing published research reports. In addition, healthcare decision-makers from three MICs were questioned about their perception of how HTA implementation will affect their country's health system.Wefound that the positive effects of HTA implementation outweigh the negative ones; specifically, the transparency and accountability of decisions are improved. However, although HTA implementation may generate cost savings in specific areas, it may not significantly contribute to overall financial sustainability.     

Understanding Canadian Health Technology Assessment through a systems lens

ObjectiveGovernments around the world face challenges in maintaining sustainable, high-quality healthcare systems. Health Technology Assessment (HTA) is widely used as a method to assist in funding decisions. However, the scope and influence of HTA is still limited. We examined how policymakers can improve the usefulness of HTA.MethodsWe used Systems Thinking as a theoretical framework to examine HTA as a system. We purposely sampled stakeholders involved in Canadian HTA at a national or provincial level. We conducted 22 semi-structured interviews in September-December 2016. Data were analysed using NVivo10 and findings are presented as a concept map with explanatory text.FindingsThe HTA system is influenced by stakeholder interactions. Such interactions are, in turn, affected by stakeholders' worldviews and environmental factors. Stakeholders' worldviews includes individual's or groups' values and affect the exchange of information, and interpretation of events. External factors, such as changes to government structures, also affect the system.ConclusionMost stakeholder groups are supportive of the system. However, participants identified a need for change, though the exact changes being recommended differed. Some interactions were praised (formal, inclusive collaborations to provide government with policy guidance on both broad and technology-specific matters), while other interactions were criticised (two-party alliances formed around purposes other than the common good, and lacklustre patient and industry engagement on the part of provincial government).     

An international survey and modified Delphi approach revealed numerous rapid review methods

ObjectivesTo solicit experiences with and perceptions of rapid reviews from stakeholders, including researchers, policy makers, industry, journal editors, and health care providers.Study Design and SettingAn international survey of rapid review producers and modified Delphi.ResultsForty rapid review producers responded on our survey (63% response rate). Eighty-eight rapid reviews with 31 different names were reported. Rapid review commissioning organizations were predominantly government (78%) and health care (58%) organizations. Several rapid review approaches were identified, including updating the literature search of previous reviews (92%); limiting the search strategy by date of publication (88%); and having only one reviewer screen (85%), abstract data (84%), and assess the quality of studies (86%). The modified Delphi included input from 113 stakeholders on the rapid review approaches from the survey. Approach 1 (search limited by date and language; study selection by one reviewer only, and data abstraction and quality appraisal conducted by one reviewer and one verifier) was ranked the most feasible (72%, 81/113 responses), with the lowest perceived risk of bias (12%, 12/103); it also ranked second in timeliness (37%, 38/102) and fifth in comprehensiveness (5%, 5/100).ConclusionRapid reviews have many names and approaches, and some methods might be more desirable than others.     

Ranking the Criteria Used in the Appraisal of Drugs for Reimbursement: A Stated Preferences Elicitation With Health Technology Assessment Stakeholders Across Jurisdictional Contexts

ObjectivesOur goal was to estimate the relative importance assigned to health technology assessment (HTA) criteria by stakeholders involved in the HTA process. HTA is an increasingly common framework used in the appraisal of drugs for public reimbursement. It identifies clinical, economic, social, and organizational criteria to be considered. The criteria can vary across jurisdictions and are typically appraised by multidisciplinary expert committees. Guidance on the relative weighing of criteria is often absent.MethodsWe elicited stakeholders’ preferences using a single-scenario discrete choice experiment and a best-worst scaling model with conviction scores to assess the weights assigned to selected criteria by HTA stakeholders. We recruited 111 HTA stakeholders across multiple jurisdictions, including members of expert committees, clinical and economic experts, patients, and public payer representatives. Each judged twelve hypothetical cancer drug profiles for suitability for public funding and identified which characteristics were best and worst. In addition to standard discrete choice experiment and best-worst scaling models, we estimated a hybrid model to obtain a ranking of criteria by importance they played in the appraisal.ResultsA strong clinical benefit proved the most important criterion, followed by cost considerations, presence of adverse events, and availability of other treatments. The importance of clinical benefit was moderated by unmet need, adverse events, and number of patients.ConclusionPolicymakers might want to consider providing an explicit weighing scheme, or moving to a 2-stage selection process with an assessment of the quality of clinical evidence as a gatekeeping step for a full HTA review.     

The Saudi Ministry of Health’s Twitter Communication Strategies and Public Engagement During the COVID-19 Pandemic: Content Analysis Study

BackgroundDuring a public health crisis such as the current COVID-19 pandemic, governments and health authorities need quick and accurate methods of communicating with the public. While social media can serve as a useful tool for effective communication during disease outbreaks, few studies have elucidated how these platforms are used by the Ministry of Health (MOH) during disease outbreaks in Saudi Arabia.ObjectiveGuided by the Crisis and Emergency Risk Communication model, this study aimed to explore the MOH’s use of Twitter and the public’s engagement during different stages of the COVID-19 pandemic in Saudi Arabia.MethodsTweets and corresponding likes and retweets were extracted from the official Twitter account of the MOH in Saudi Arabia for the period of January 1 through August 31, 2020. Tweets related to COVID-19 were identified; subsequently, content analysis was performed, in which tweets were coded for the following message types: risk messages, warnings, preparations, uncertainty reduction, efficacy, reassurance, and digital health responses. Public engagement was measured by examining the numbers of likes and retweets. The association between outbreak stages and types of messages was assessed, as well as the effect of these messages on public engagement.ResultsThe MOH posted a total of 1393 original tweets during the study period. Of the total tweets, 1293 (92.82%) were related to COVID-19, and 1217 were ultimately included in the analysis. The MOH posted the majority of its tweets (65.89%) during the initial stage of the outbreak. Accordingly, the public showed the highest level of engagement (as indicated by numbers of likes and retweets) during the initial stage. The types of messages sent by the MOH significantly differed across outbreak stages, with messages related to uncertainty reduction, reassurance, and efficacy being prevalent among all stages. Tweet content, media type, and crisis stage influenced the level of public engagement. Engagement was negatively associated with the inclusion of hyperlinks and multimedia files, while higher level of public engagement was associated with the use of hashtags. Tweets related to warnings, uncertainty reduction, and reassurance received high levels of public engagement.ConclusionsThis study provides insights into the Saudi MOH’s communication strategy during the COVID-19 pandemic. Our results have implications for researchers, governments, health organizations, and practitioners with regard to their communication practices during outbreaks. To increase public engagement, governments and health authorities should consider the public’s need for information. This, in turn, could raise public awareness regarding disease outbreaks.     

“It all depends”: Conceptualizing public involvement in the context of health technology assessment agencies

There have been calls in recent years for greater public involvement in health technology assessment (HTA). Yet the concept of public involvement is poorly articulated and little attention has been paid to the context of HTA agencies. This article investigates how public involvement is conceptualized in the HTA agency environment. Using qualitative concept analysis methods, we reviewed the HTA literature and the websites of HTA agencies and conducted semi-structured interviews with informants in Canada, Denmark, and the United Kingdom. Our analysis reveals that HTA agencies' role as bridges or boundary organizations situated at the frontier of research and policymaking causes the agencies to struggle with the idea of public involvement. The HTA community is concerned with conceptualizing public involvement in such a way as to meet scientific and methodological standards without neglecting its responsibilities to healthcare policymakers. We offer a conceptual tool for analyzing the nature of public involvement across agencies, characterizing different domains, levels of involvement, and types of publics.     

Do Cost-Effectiveness Analyses Account for Drug Genericization? A Literature Review and Assessment of Implications

ObjectivesWe investigated how health technology assessment (HTA) organizations around the world have handled drug genericization (an allowance for future generic drug entry and subsequent drug price declines) in their guidelines for cost-effectiveness analyses (CEAs). We also analyzed a large sample of published CEAs to examine prevailing practices in the field.MethodsWe reviewed 43 HTA guidelines to determine whether and how they addressed drug genericization in their CEAs. We also selected a sample of 270 US-based CEAs from the Tufts Medical Center’s CEA Registry, restricting the sample to studies on pharmaceuticals published from 1991 to 2019 and to analyses taking a lifetime time horizon. We determined whether each CEA examined genericization (and if so, whether in base case or sensitivity analyses), and how inclusion of genericization influenced the estimated incremental cost-effectiveness ratios.ResultsFourteen (33%) of the 43 HTA guidelines mention genericization for CEAs and 4 (9%) recommend that base case analyses include assumptions about future drug price changes due to genericization. Most published CEAs (95%) do not include assumptions about future generic prices for intervention drugs. Only 2% include such assumptions about comparator drugs. Most studies (72%) conduct sensitivity analyses on drug prices unrelated to genericization.ConclusionsThe omission of assumptions about genericization means that CEAs may misrepresent the long run opportunity costs for drugs. The field needs clearer guidance for when CEAs should account for genericization, and for the inclusion of other price dynamics that might influence a drug’s cost-effectiveness.     

Budgeting for a billion: applying health technology assessment (HTA) for universal health coverage in India

Background

India recently launched the largest universal health coverage scheme in the world to address the gaps in providing healthcare to its population. Health technology assessment (HTA) has been recognised as a tool for setting priorities as the government seeks to increase public health expenditure. This study aims to understand the current situation for healthcare decision-making in India and deliberate on the opportunities for introducing HTA in the country.

Methods

A paper-based questionnaire, adapted from a survey developed by the International Decision Support Initiative (iDSI), was administered on the second day of the Topic Selection Workshop that was conducted as part of the HTA Awareness Raising Workshop held in New Delhi on 25–27 July, 2016. Participants were invited to respond to questions covering the need, demand and supply for HTA in their context as well as the role of their organisation vis-à-vis HTA. The response rate for the survey was about 68% with 41 participants having completed the survey.

Results

Three quarters of the respondents (71%) stated that the government allocated healthcare resources on the basis of expert opinion. Most respondents indicated reimbursement of individual health technologies and designing a basic health benefit package (93% each) were important health policy areas while medical devices and screening programmes were cited as important technologies (98% and 92%, respectively). More than half of the respondents noted that relevant local data was either not available or was limited. Finally, technical capacity was seen as a strength and a constraint facing organisations.

Conclusion

The findings from this study shed light on the current situation, the opportunities, including potential topics, and challenges in conducting HTA in India. There are limitations to the study and further studies may need to be conducted to inform the role that HTA will play in the design or implementation of universal health coverage in India.

     

Differences in Health Technology Assessment Recommendations Among European Jurisdictions: The Role of Practice Variations

BackgroundHealth technology assessment (HTA) plays an important role in reimbursement decision-making in many countries, but recommendations vary widely throughout jurisdictions, even for the same drug. This variation may be due to differences in the weighing of evidence or differences in the processes or procedures, which are known as HTA practices.ObjectiveTo provide insight into the effects of differences in practices on interpretation of intercountry differences in HTA recommendations for conditionally approved drugs.MethodsHTA recommendations for conditionally approved drugs (N = 27) up until June 2017 from England/Wales, France, Germany, the Netherlands, and Scotland were included. Recommendations and practice characteristics were extracted from these five jurisdictions and this data was validated. The effect of nonsubmissions, resubmissions, and reassessments; cost-effectiveness assessments; and price negotiations on changes in the percentage of negative recommendations and the interpretation of intercountry differences in HTA outcomes were analyzed using Fisher exact tests.ResultsThe inclusion of cost-effectiveness assessments led to significant increases in the proportion of negative recommendations in England/Wales (from 4% to 50%, P<.01) and Scotland (from 21% to 71%, P<.01). The subsequent inclusion of price negotiations led to significant reductions in the proportion of negative recommendations in England/Wales (from 50% to 14%, P<.01), France (from 31% to 3%, P=.012), and Germany (from 34% to 0%, P<.01). Results indicated that the inclusion of nonsubmissions and resubmissions might affect Scottish negative HTA recommendations (from 7% to 21%), but this effect was not significant. No significant effects were observed in the Netherlands, possibly owing to sample size.ConclusionVariations in HTA practices between international jurisdictions can have a substantial and significant impact on conclusions about recommendations by HTA bodies, as exemplified in this cohort of conditionally approved products. Studies comparing international HTA recommendations should carefully consider possible practice variations between jurisdictions.     

Development and Pilot Test of the Registry Evaluation and Quality Standards Tool: An Information Technology–Based Tool to Support and Review Registries

ObjectivesHealth technology assessment (HTA) bodies are increasingly making use of real-world evidence and data. High-quality registries could be an asset for this; nevertheless, there is a lack of specified standards to assess the quality of data in the registry, or the registry itself. The European Network for Health Technology Assessment Joint Action 3 led the work to develop a tool for the evaluation of clinical registries: the “Registry Evaluation and Quality Standards Tool” (REQueST).MethodsREQueST was developed in 4 steps: (1) A partnership between HTA bodies across Europe drafted the assessment criteria. (2) Multiple rounds of consultation across HTA bodies and the public domain developed an Excel version of REQueST. (3) This version was transformed into a web-based application. (4) An external pilot tested this REQueST tool with SMArtCARE and NeuroTransData registries.ResultsHaute Autorité de Santé, the National Institute for Health and Care Excellence, and the Croatian Institute of Public Health led the development of REQueST. Another 4 HTA bodies contributed regularly to development meetings, and all European Network for Health Technology Assessment partners were invited to contribute. Eight methodological, 12 essential, and 3 supplementary criteria were identified. Both pilot registries scored well, fulfilling the requirements for >70% of criteria, with none failed. Feedback by registry holders led to streamlining of the process and clarification of the criteria.ConclusionsThe REQueST tool uses an iterative and collaborative methodology with registry holders. It has the potential to maximize the utility of registry data for decision making by regulatory and HTA bodies and provides a foundation for future research.     

Stakeholder perspectives towards implementing the national framework on palliative care in Canada

ContextIn 2018 Health Canada developed a national framework and subsequent action plan for palliative care. Collaboration and implementation by stakeholder organizations however continues to take place without coordination. Little is known about their attitudes toward national policy development and motivation to work together.MethodsWe employ a well-known stakeholder analysis framework to identify and understand the attitudes of key stakeholders. Organizations that have contributed to national palliative policy development over the past 25 years were identified and prioritized. In this paper, we survey key stakeholders to understand their attitudes towards collaboration and implementation of the 2018 Framework. A novel method to identify homogeneous stakeholder cohorts was developed.FindingsFifty-four out of 75 key organizations (72%) completed the survey. Organizations genuinely support the Framework. However, three-quarters of organizations were not confident in their abilities to strongly influence national palliative care policies. Barriers to collaboration include differences in governance models and funding arrangements, a lack of resources and divergent priorities. Homogeneous stakeholder cohorts and in-depth analysis of stakeholder characteristics resulted in recommendations to support targeted engagement strategies.ConclusionsImplementation of national palliative care policies requires a large-scale coordinated approach involving all stakeholders. Recommendations are centered on the premise that targeted and tailored stakeholder engagement needs to be coordinated and is superior to a one-size fits all approach.