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What Procedural Ethics Can Learn from the Quest for Moral Justification for the "Rule of Rescue". 程序伦理学从“救助规则”的道德正当性探索中学到什么?
Healthcare Papers Pub Date : 2023-01-01 DOI: 10.12927/hcpap.2023.26997
Bernard Keating
{"title":"What Procedural Ethics Can Learn from the Quest for Moral Justification for the \"Rule of Rescue\".","authors":"Bernard Keating","doi":"10.12927/hcpap.2023.26997","DOIUrl":"https://doi.org/10.12927/hcpap.2023.26997","url":null,"abstract":"<p><p>In this issue, Sirrs and colleagues (2023) provide a very informative picture of the value and cost of policies to promote orphan drug development. They examine the influence of these policies on pharmaceutical research and development, the proliferation of rare diseases, the prohibitive costs and the loopholes of these policies. One section of the paper identifies the ethical issues and proposes a response to the challenge of integrating the utility perspectives of pharmacoeconomic analyses with those of treatment access claims formulated from a deontological perspective. Their proposal is essentially that of procedural ethics. I enter the ethical debate obliquely by looking at the rule of rescue phenomenon observed by Albert R. Jonsen (Jonsen 1986). I explore the twists and turns of the discussion on this subject and assume the perspective of authors who give significant weight to the symbolic value of respecting it. In conclusion, I take up the symbolic question by arguing that the challenge of preserving the aura of legitimacy that must surround political decisions sometimes requires distancing oneself from sound recommendations, which, even if they are the result of an ideal procedure, will nevertheless be perceived as unjust and insensitive.</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"21 1","pages":"38-43"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9556721","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
International Experiences and Made-in-Canada "Social Pharmaceutical Innovations" as Responses to Challenges Facing Drugs for Rare Diseases. 国际经验和加拿大制造的“社会药学创新”应对罕见病药物面临的挑战。
Healthcare Papers Pub Date : 2023-01-01 DOI: 10.12927/hcpap.2023.26993
Conor M W Douglas
{"title":"International Experiences and Made-in-Canada \"Social Pharmaceutical Innovations\" as Responses to Challenges Facing Drugs for Rare Diseases.","authors":"Conor M W Douglas","doi":"10.12927/hcpap.2023.26993","DOIUrl":"https://doi.org/10.12927/hcpap.2023.26993","url":null,"abstract":"<p><p>Significant challenges are associated with the availability of and access to treatments for rare diseases. In this issue, Sirrs et al. (2023) frame challenges in terms of evidence, economics and ethics and describe how they manifest in the Canadian context. This short response paper argues that although interesting initiatives exist internationally to deal with some of these challenges, a plug-and-play approach will not suffice given the particularities of the Canadian system. Rather than seeking international lessons on how to deal with Canadian challenges, the emerging interdisciplinary framework of social pharmaceutical innovation is advanced here as a whole-systems approach that stands to address interconnected components of the rare disease ecosystem, and in doing so, a made-in-Canada approach is advocated for.</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"21 1","pages":"66-72"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9550340","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Competing Values, Competing Claims: Diversity among Patient Advocates Who Intervene to Shape Policies on Drugs for Rare Diseases. 竞争的价值观，竞争的主张:干预形成罕见疾病药物政策的患者倡导者的多样性。
Healthcare Papers Pub Date : 2023-01-01 DOI: 10.12927/hcpap.2023.26995
Sharon Batt
{"title":"Competing Values, Competing Claims: Diversity among Patient Advocates Who Intervene to Shape Policies on Drugs for Rare Diseases.","authors":"Sharon Batt","doi":"10.12927/hcpap.2023.26995","DOIUrl":"https://doi.org/10.12927/hcpap.2023.26995","url":null,"abstract":"<p><p>Patient advocacy groups can push regulators to approve and pay for expensive drugs despite weak evidence of efficacy and/or safety. Advocacy organizations that critique high prices for rare diseases are less publicized but can also influence policy. The funding and relationships many groups have with the pharmaceutical industry may contribute to patient advocates' differing perspectives, but the leaders' values and experiences are an overlooked factor. We need to understand the dominant public-private partnership model of patient advocacy, its historical roots, justification and how key advocacy actors respond to it if we are to advance policies that will contain expensive drugs for rare diseases.</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"21 1","pages":"52-58"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9556722","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Expensive Drugs for Rare Diseases in Canada: Time for Action Everywhere and by Everyone. 加拿大罕见病药物昂贵：是时候让每个人都行动起来了。
Healthcare Papers Pub Date : 2023-01-01 DOI: 10.12927/hcpap.2023.26992
Sandra Sirrs, Helen Anderson, Bashir Jiwani, Eric Lun, Bob Nakagawa, Dean Regier, Shirin Rizzardo, Anne McFarlane
{"title":"Expensive Drugs for Rare Diseases in Canada: Time for Action Everywhere and by Everyone.","authors":"Sandra Sirrs, Helen Anderson, Bashir Jiwani, Eric Lun, Bob Nakagawa, Dean Regier, Shirin Rizzardo, Anne McFarlane","doi":"10.12927/hcpap.2023.26992","DOIUrl":"10.12927/hcpap.2023.26992","url":null,"abstract":"<p><p>Expensive drugs for rare diseases pose unique economic, evidentiary and ethical challenges, and these will continue to escalate unless steps are taken urgently to address these challenges. We propose concrete actions that all stakeholders (federal and provincial/territorial governments, patients, healthcare providers, the public and drug manufacturers) could take now as a first step toward enhancing sustainability in the use of innovative (albeit expensive) therapies within our publicly funded healthcare system.</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"21 1","pages":"74-80"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9556723","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Can Managed Access Agreements Mitigate Evidentiary, Economic and Ethical Issues with Access to Expensive Drugs for Rare Diseases in the Canadian Context? 管理准入协议能否减轻加拿大罕见病昂贵药物获取的证据、经济和伦理问题?
Healthcare Papers Pub Date : 2023-01-01 DOI: 10.12927/hcpap.2023.26994
Melanie McPhail, Tania Bubela
{"title":"Can Managed Access Agreements Mitigate Evidentiary, Economic and Ethical Issues with Access to Expensive Drugs for Rare Diseases in the Canadian Context?","authors":"Melanie McPhail,&nbsp;Tania Bubela","doi":"10.12927/hcpap.2023.26994","DOIUrl":"https://doi.org/10.12927/hcpap.2023.26994","url":null,"abstract":"<p><p>Expensive drugs for rare diseases (EDRDs) pose challenges for regulatory and reimbursement decision makers. Managed access agreements (MAAs), conditional reimbursement schemes that use a variety of price and evidence generation mechanisms to support value-based decision making, have the potential to address the evidentiary, economic and ethical issues associated with EDRDs. Several jurisdictions have successfully used MAAs to manage budget impact and evidentiary uncertainties, demonstrating the promise of this approach. We comment on the feasibility of adopting MAAs in Canada to address challenges associated with EDRDs. Adopting MAAs in the Canadian context requires attention to Canada's federated healthcare and drug coverage system and will require investing in robust data infrastructure and governance systems.</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"21 1","pages":"59-65"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9556724","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Specific, Fair and Transparent: A Canadian Process for Funding Drugs for Rare Diseases. 具体、公平和透明:加拿大为罕见疾病药物提供资金的程序。
Healthcare Papers Pub Date : 2023-01-01 DOI: 10.12927/hcpap.2023.26999
Helen Stevenson
{"title":"Specific, Fair and Transparent: A Canadian Process for Funding Drugs for Rare Diseases.","authors":"Helen Stevenson","doi":"10.12927/hcpap.2023.26999","DOIUrl":"https://doi.org/10.12927/hcpap.2023.26999","url":null,"abstract":"<p><p>In Canada, the focus on value for money and evaluating efficacy according to traditional ways has presented challenges to the funding of drugs for rare diseases (DRDs). This commentary validates and extends two worthy recommendations from the lead paper in this issue of <i>Healthcare Papers</i> (Sirrs et al. 2023). The paper's first recommendation, for a pan-Canadian approach for collecting evidentiary data, is critical. In the commentary, I add to this finding by suggesting that we enable patients to track and measure their response to treatment through data capture. The second recommendation is a pan-Canadian framework for funding DRDs. I extend the recommendation with an argument for public and private payer guidance as well as a fair and transparent funding framework solely for DRDs.</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"21 1","pages":"28-33"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9550343","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Expensive Drugs for Rare Diseases in Canada: What Value and at What Cost? 加拿大罕见病昂贵药物的价值和成本?
Healthcare Papers Pub Date : 2023-01-01 DOI: 10.12927/hcpap.2023.27000
Sandra Sirrs, Helen Anderson, Bashir Jiwani, Larry D Lynd, Eric Lun, Bob Nakagawa, Dean Regier, Shirin Rizzardo, Anne McFarlane
{"title":"Expensive Drugs for Rare Diseases in Canada: What Value and at What Cost?","authors":"Sandra Sirrs,&nbsp;Helen Anderson,&nbsp;Bashir Jiwani,&nbsp;Larry D Lynd,&nbsp;Eric Lun,&nbsp;Bob Nakagawa,&nbsp;Dean Regier,&nbsp;Shirin Rizzardo,&nbsp;Anne McFarlane","doi":"10.12927/hcpap.2023.27000","DOIUrl":"https://doi.org/10.12927/hcpap.2023.27000","url":null,"abstract":"<p><p>There has been explosive growth in the market for expensive drugs for rare diseases (EDRDs). Traditional standards of evidence are not achievable for rare diseases, so lower standards are applied. The price of these drugs is extremely high. This combination of lower standards and higher prices make EDRDs attractive to manufacturers. Legislation designed to incentivize drug development for rare diseases contains loopholes that drive prices up worldwide. Canada compounds those problems with a complex network of agencies that impede communication between those providing market authorization and those purchasing drugs. Drug pricing is not related to metrics like investment or value, but rather willingness to pay. Without high-quality evidence to assess value, we inadvertently prioritize patients with rare diseases over those with common diseases, creating conflict among ethical principles such as social utility, justice and the rule of rescue. Lack of transparency over what is being funded and for whom makes it hard to mitigate challenges through effective policy development. We review the evidentiary, economic and ethical issues around EDRDs and ways to move forward, including enhanced transparency and the development of high-quality evidence to ensure that we do not pay for drugs that do not work.</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"21 1","pages":"10-26"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9556718","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
Expensive Drugs for Rare Diseases: "Canada, We Have a Problem Here". 罕见疾病的昂贵药物:“加拿大，我们这里有一个问题”。
Healthcare Papers Pub Date : 2023-01-01 DOI: 10.12927/hcpap.2023.27001
Joel Lexchin
{"title":"Expensive Drugs for Rare Diseases: \"Canada, We Have a Problem Here\".","authors":"Joel Lexchin","doi":"10.12927/hcpap.2023.27001","DOIUrl":"https://doi.org/10.12927/hcpap.2023.27001","url":null,"abstract":"<p><p>This issue of <i>Healthcare Papers</i> on expensive drugs for rare diseases (EDRDs) is very timely. According to the recently released Patented Medicine Prices Review Board's 2021 annual report, EDRDs have gone from 1.7% of pharmaceutical expenditures in 2012 to 12.2% in 2021, with a compound annual growth rate between 2012 and 2021 of 31.7% compared to 6.0% for all prescription medicines (PMPRB 2022).</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"21 1","pages":"4-8"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9172171","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Leveraging the Five Perspectives of Health Professional Education to Advance Change Management in Virtual Care. 利用卫生专业教育的五个视角来推进虚拟医疗的变革管理。
Healthcare Papers Pub Date : 2022-04-01 DOI: 10.12927/hcpap.2022.26960
Kendall Ho
{"title":"Leveraging the Five Perspectives of Health Professional Education to Advance Change Management in Virtual Care.","authors":"Kendall Ho","doi":"10.12927/hcpap.2022.26960","DOIUrl":"https://doi.org/10.12927/hcpap.2022.26960","url":null,"abstract":"<p><p>Virtual care (VC) was rapidly introduced into mainstream health service delivery due to COVID-19. To maintain and integrate VC with in-person care, one important change management approach requires a holistic educational strategy for the health professions. Pratt's (1998) \"five perspectives of teaching\" is an effective framework to guide the development of VC education to holistically increase the knowledge and skills of health professionals and stimulate health system change through the Transmission, Apprenticeship, Developmental, Nurturing and Social Reform perspectives. This article then makes five recommendations to implement this strategy through purposeful involvement and collaborations between stakeholder organizations.</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"20 4","pages":"57-61"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10608633","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Modernize the Healthcare System: Stewardship of a Strong Health Data Foundation. 现代化医疗保健系统:管理一个强大的健康数据基础。
Healthcare Papers Pub Date : 2022-04-01 DOI: 10.12927/hcpap.2022.26842
Vivek Goel, Kimberlyn McGrail
{"title":"Modernize the Healthcare System: Stewardship of a Strong Health Data Foundation.","authors":"Vivek Goel,&nbsp;Kimberlyn McGrail","doi":"10.12927/hcpap.2022.26842","DOIUrl":"https://doi.org/10.12927/hcpap.2022.26842","url":null,"abstract":"<p><p>The Canadian Institutes of Health Research - Institute of Health Services and Policy Research (IHSPR) has published its Strategic Plan 2021-2026 (CIHR IHSPR 2021) and, as members of the Expert Advisory Group for a Pan-Canadian Health Data Strategy, we are providing commentary on the second strategic priority of IHSPR's Strategy related to health data and digital health. Systemic barriers have prevented the timely and effective collection, sharing and use of health data in Canada. Many of these systemic barriers relate to the fragmented health data foundation, lack of coordinated data governance and a risk-averse culture. As IHSPR mobilizes its strategic plan, it will be important to consider and address these factors head-on to contribute to a stronger health data foundation that would help achieve both IHSPR's strategic objectives and meaningfully contribute to elevating Canada's health data ecosystem.</p>","PeriodicalId":35522,"journal":{"name":"Healthcare Papers","volume":"20 3","pages":"61-68"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40400008","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
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