68 results on '"Durhane Wong-Rieger"'
Search Results
2. How can we deliver on the promise of precision medicine in oncology and beyond? A practical roadmap for action
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Anne‐Marie Baird, C. Benedikt Westphalen, Sandra Blum, Begonya Nafria, Tanya Knott, Ify Sargeant, Helena Harnik, Nicholas Brooke, Nicole Wicki, and Durhane Wong‐Rieger
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collaborative precision medicine ,equitable access precision medicine ,patient engagement ,precision medicine ,Medicine - Abstract
Abstract Background Precision medicine (PM) is a form of personalized medicine that recognizes that individuals with the same condition may have different underlying factors and uses molecular information to provide tailored treatments. This approach can improve treatment outcomes and transform lives through favorable risk/benefit ratios, avoidance of ineffective interventions, and possible cost savings, as evidenced in the field of lung cancer and other oncology/therapeutic settings, including cardiac disease, diabetes, and rare diseases. However, the potential benefits of PM have yet to be fully realized. Discussion There are many barriers to the implementation of PM in clinical practice, including fragmentation of the PM landscape, siloed approaches to address shared challenges, unwarranted variation in availability and access to PM, lack of standardization, and limited understanding of patients' experience and needs throughout the PM pathway. We believe that a diverse, intersectoral multistakeholder collaboration, with three main pillars of activity: generation of data to demonstrate the benefit of PM, education to support informed decision‐making, and addressing barriers across the patient pathway, is necessary to reach the shared goal of making PM an accessible and sustainable reality. Besides healthcare providers, researchers, policymakers/regulators/payers, and industry representatives, patients in particular must be equal partners and should be central to the PM approach―from early research through to clinical trials and approval of new treatments―to ensure it represents their entire experience and identifies barriers, solutions, and opportunities at the point of delivery. Conclusion We propose a practical and iterative roadmap to advance PM and call for all stakeholders across the healthcare system to employ a collaborative, cocreated, patient‐centered methodology to close gaps and fully realize the potential of PM.
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- 2023
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- View/download PDF
3. An international comparative analysis of public reimbursement of orphan drugs in Canadian provinces compared to European countries
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Leanne Marie Ward, Alexandra Chambers, Emine Mechichi, Durhane Wong-Rieger, and Craig Campbell
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Rare disease ,Orphan drugs ,Reimbursement ,Regulatory approval ,Funding decisions ,Patient access ,Medicine - Abstract
Abstract Background The Canadian government has committed to developing a national strategy for drugs for rare diseases starting in 2022. Considering this announcement, we conducted a comparative analysis to examine patient access to therapies for rare disease in Canada relative to Europe and the U.S. Methods Given its similarity to the Canadian health care system, we used Europe as the reference point to analyze all of the therapies with an orphan drug designation approved by the European Medicine Agency (EMA) from 1 January 2015 to 31 March 2020. We then contrasted access to these drugs in Canada (Health Canada) and the U.S. (Food and Drug Administration, FDA). We focused on: (1) the number of therapies for rare diseases entering the Canadian market; (2) the percentage of these therapies that are publicly available to Canadians; and (3) the timelines for patients to access these therapies in Canada. Results Sixty-three approved therapies with an orphan drug designation from the EMA were identified. Fifty-three (84%) of these drugs had also been submitted to the FDA for approval, and 41 (65%) were submitted to Health Canada for approval. In Europe, Germany, Denmark, and the U.K. had the highest percentage of publicly reimbursed orphan drugs (84%, 70%, 68%, respectively). In comparison, Ontario (32%), Quebec (25%), and Alberta (25%) had the highest percentage of drugs reimbursed among the Canadian provinces. The shortest median duration (in months) from EMA approval to jurisdictional decision on reimbursement was in Austria (3.2), followed by Germany (4.1), and Finland (6.0). In Canada, the shortest median duration (in months) from regulatory approval to reimbursement was in British Columbia (17.3), Quebec (19.6) and Manitoba (19.6), while the longest duration was in P.E.I (38.5), followed by Nova Scotia (25.9), and Newfoundland (25.1). Conclusions Our comparative analysis found that relative to the EU Canadians had less frequent and timely access to therapies for rare diseases. This highlights the need for a rare disease strategy in Canada that allows for clear identification and transparent tracking of the pathway for rare disease drugs, and ultimately optimizes the number of patients with access to these therapies.
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- 2022
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4. Essential list of medicinal products for rare diseases: recommendations from the IRDiRC Rare Disease Treatment Access Working Group
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William A. Gahl, Durhane Wong-Rieger, Virginie Hivert, Rachel Yang, Galliano Zanello, and Stephen Groft
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Medicine - Abstract
Abstract Background Treatments are often unavailable for rare disease patients, especially in low-and-middle-income countries. Reasons for this include lack of financial support for therapies and onerous regulatory requirements for approval of drugs. Other barriers include lack of reimbursement, administrative infrastructure, and knowledge about diagnosis and drug treatment options. The International Rare Diseases Research Consortium set up the Rare Disease Treatment Access Working Group with the first objective to develop an essential list of medicinal products for rare diseases. Results The Working Group extracted 204 drugs for rare diseases in the FDA, EMA databases and/or China’s NMPA databases with approval and/or marketing authorization. The drugs were organized in seven disease categories: metabolic, neurologic, hematologic, anti-inflammatory, endocrine, pulmonary, and immunologic, plus a miscellaneous category. Conclusions The proposed list of essential medicinal products for rare diseases is intended to initiate discussion and collaboration among patient advocacy groups, health care providers, industry and government agencies to enhance access to appropriate medicines for all rare disease patients throughout the world.
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- 2021
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5. Model consent clauses for rare disease research
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Minh Thu Nguyen, Jack Goldblatt, Rosario Isasi, Marlene Jagut, Anneliene Hechtelt Jonker, Petra Kaufmann, Laetitia Ouillade, Fruszina Molnar-Gabor, Mahsa Shabani, Eric Sid, Anne Marie Tassé, Durhane Wong-Rieger, Bartha Maria Knoppers, and on behalf of the IRDiRC-GA4GH Model Consent Clauses Task Force
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Rare diseases ,Informed consent ,Research ethics ,Core consent elements ,Consent clauses ,Medical philosophy. Medical ethics ,R723-726 - Abstract
Abstract Background Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. Methods A global Task Force was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research participants around the world. Existing consent forms and notices of consent were analyzed and classified under different consent themes, which were used as background to develop the model consent clauses. Results The IRDiRC-GA4GH MCC Task Force met in September 2018, to discuss and design model consent clauses. Based on analyzed consent forms, they listed generic core elements and designed the following rare disease research specific core elements; Rare Disease Research Introductory Clause, Familial Participation, Audio/Visual Imaging, Collecting, storing, sharing of rare disease data, Recontact for matching, Data Linkage, Return of Results to Family Members, Incapacity/Death, and Benefits. Conclusion The model consent clauses presented in this article have been drafted to highlight consent elements that bear in mind the trends in rare disease research, while providing a tool to help foster harmonization and collaborative efforts.
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- 2019
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6. Review of 11 national policies for rare diseases in the context of key patient needs
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Safiyya Dharssi, Durhane Wong-Rieger, Matthew Harold, and Sharon Terry
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National rare disease plan ,Policy ,Legislation ,Patient advocacy ,Europe ,Asia ,Medicine - Abstract
Abstract Rare diseases collectively exert a global public health burden in the severity of their manifestations and the total number of people they afflict. For many patients, considerable barriers exist in terms of access to appropriate care, delayed diagnosis and limited or non-existing treatment options. Motivated by these challenges, the rare disease patient community has played a critical role, elevating the patient voice and mobilizing legislation to support the development of programs that address the needs of patients with rare diseases. The US Orphan Drug Act of 1983 served as a key milestone in this journey, providing a roadmap for other countries to introduce and implement similar orphan drug legislation; more recently, the European Union (EU) has gone further to encourage the widespread adoption and implementation of rare disease plans or strategies designed to more adequately address the comprehensive needs of patients with rare diseases. Despite these legislative efforts and the growing contributions of patient advocacy groups in moving forward implementation and adoption of rare disease programs, gaps still exist across the policy landscape for several countries. To gain deeper insights into the challenges and opportunities to address key needs of rare disease patients, it is critical to define the current status of rare disease legislation and policy across a geographically and economically diverse selection of countries. We analyzed the rare disease policy landscape across 11 countries: Germany, France, the United Kingdom, Canada, Bulgaria, Turkey, Argentina, Mexico, Brazil, China, and Taiwan. The status and implementation of policy was evaluated for each country in the context of key patient needs across 5 dimensions: improving coordination of care, diagnostic resources, access to treatments, patient awareness and support, and promoting innovative research. Our findings highlight the continuing role of the patient community in driving the establishment and adoption of legislation and programs to improve rare disease care. Further, we found that while national rare disease plans provide important guidance for improving care, implementation of plans is uneven across countries. More research is needed to demonstrate the effect of specific elements of rare disease plans on patient outcomes.
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- 2017
- Full Text
- View/download PDF
7. Developing a Framework of Cost Elements of Socioeconomic Burden of Rare Disease: A Scoping Review
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Gillian R. Currie, Brittany Gerber, Diane Lorenzetti, Karen MacDonald, Susanne M. Benseler, Francois P. Bernier, Kym M. Boycott, K. Vanessa Carias, Bettina Hamelin, Robin Z. Hayeems, Claire LeBlanc, Marinka Twilt, Gijs van Rooijen, Durhane Wong-Rieger, Rae S. M. Yeung, and Deborah A. Marshall
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Pharmacology ,Health Policy ,Public Health, Environmental and Occupational Health - Published
- 2023
8. International Management Research: Looking to the Future
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Durhane Wong-Rieger, Fritz Rieger, Durhane Wong-Rieger, Fritz Rieger and Durhane Wong-Rieger, Fritz Rieger, Durhane Wong-Rieger, Fritz Rieger
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- 2017
9. Research on rare diseases: ten years of progress and challenges at IRDiRC
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Lucia Monaco, Galliano Zanello, Gareth Baynam, Anneliene H. Jonker, Daria Julkowska, Adam L. Hartman, Daniel O’Connor, Chiuhui Mary Wang, Durhane Wong-Rieger, and David A. Pearce
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Pharmacology ,Rare Diseases ,International Cooperation ,Drug Discovery ,Humans ,General Medicine ,Article - Published
- 2022
10. A call for global action for rare diseases in Africa
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Ann Nordgren, Stephanie Broley, Mengchun Gong, James Chipeta, Zhang Shuyang, Durhane Wong-Rieger, Stephen C. Groft, Benjamin Djoudalbaye, Kristen J. Nowak, Maja Stojiljkovic, Kenjiro Kosaki, William A. Gahl, Safiyya D. Gassman, Maximilian Muenke, Sarah Bowdin, Emily P. Coles, David R. Adams, Judit Kumuthini, Manuel Posada, Tebogo Selebatso, Christopher P. Austin, Annika Larsson, Moses Selebatso, Eda Selebatso, Ruty Mehrian-Shai, Ratna D. Puri, Helene Cederroth, Christoffer Nellåker, Barbara Wuebbels, Gareth Baynam, Virginia A. Llera, Domenica Taruscio, Simon Easteal, Juergen K. V. Reichardt, Nicholas Pachter, Sergi Beltran, Maryke Schoonen, Dipesalema Joel, Feng Zhang, Francois H. van der Westhuizen, Barend Christiaan Vorster, Kelly du Plessis, Désirée Gavhed, Kym M. Boycott, Emilio J. A. Roldán, Petra Kaufmann, John Forman, Gemma A. Bilkey, Boikobo Gaobinelwe, Clara D.M. van Karnebeek, AGEM - Inborn errors of metabolism, Paediatric Metabolic Diseases, 10213503 - Van der Westhuizen, Francois Hendrikus, and 22713077 - Vorster, Barend Christiaan
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medicine.medical_specialty ,International Cooperation ,education ,MEDLINE ,Health Promotion ,Biology ,Global Health ,Orphan drug ,03 medical and health sciences ,Rare Diseases ,0302 clinical medicine ,Genetics ,Global health ,medicine ,Humans ,Health planning ,health care economics and organizations ,030304 developmental biology ,0303 health sciences ,business.industry ,Public health ,Public relations ,Call to action ,Health Planning ,Health promotion ,Action (philosophy) ,Africa ,business ,030217 neurology & neurosurgery - Abstract
The 11th International Conference on Rare Diseases and Orphan Drugs (ICORD), South Africa, included the Africa-Rare initiative launch and facilitated multi-stakeholder engagement in the challenges facing, and opportunities for, Africans living with rare diseases. The following ICORD Global Call to Action, developed in collaboration with the International Rare Diseases Research Consortium, synthesizes the outcomes of the deliberations and emphasizes the international collaborative efforts required to address the global effects of rare diseases on public health.
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- 2019
11. An International Comparative Analysis Highlighting that Canada is Not Keeping Pace With Patient Access to Drugs for Rare Diseases
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Leanne Marie Ward, Durhane Wong-Rieger, Emine Mechichi, Craig Campbell, and Alexandra Chambers
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Economic growth ,Business ,Pace - Abstract
Background: The Canadian government has committed to developing a national strategy for high-cost drugs for rare diseases starting in 2022. Considering this announcement, we conducted a comparative analysis to examine patient access to therapies for rare disease in each of Canada’s 10 provinces relative to Europe and the U.S., to understand how Canada measures up relative to other countries. Methods: We analyzed all of the therapies with an orphan drug designation approved by the European Medicine Agency (EMA) from 1 January 2015 to 31 March 2020 as the reference for the comparative analysis. We then contrasted access to these drugs in Canada (Health Canada) and the U.S. (Food and Drug Administration, FDA). Our analysis focused on: 1) the number of therapies for rare diseases entering the Canadian market; 2) the percentage of these therapies that are publicly available to Canadians; and 3) the timeliness for patient access to these therapies in Canada. Results: Our analysis identified 63 approved therapies with an orphan drug designation from the EMA. The FDA has approved 53/63 (84%) of these drugs, while Health Canada has approved 41/63 (65%). In Europe, Germany, Denmark, and the U.K. had the highest percentage of publicly reimbursed orphan drugs (84%, 70%, 68%, respectively). In comparison, Ontario (20/63, 32%), Quebec (16/63, 25%), and Alberta (16/63, 25%) had the highest percentage of drugs reimbursed among the Canadian provinces. The shortest median duration (in months) from EMA approval to jurisdictional decision on reimbursement was in Austria (3.2), followed by Germany (4.1), and Finland (6.0). In Canada, the shortest median duration (in months) from regulatory approval to reimbursement was in British Columbia (17.3), Quebec (19.6) and Manitoba (19.6), while the longest duration was in P.E.I (38.5), followed by Nova Scotia (25.9), and Newfoundland (25.1).Conclusions: Our comparative analysis found that Canadians had less frequent and timely access to therapies for rare disease than their global counterparts, highlighting the need for a strategy for rare disease in Canada that optimizes the number of patients with access to rare disease therapies, as quickly as possible.
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- 2021
12. Variation in the prices of oncology medicines across Europe and the implications for the future
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Wouter Hamelinck, Elita Poplavska, Ott Laius, Ruaraidh Hill, Jurij Fürst, Dzintars Gotham, Iva Selke Krulichová, Zornitza Mitkova, Ileana Mardare, Andrew F. Hill, Stuart McTaggart, Brian Godman, Corrine Zara, Vanda Marković-Peković, Patricia Vella Bonanno, Mark Parker, Caridad Pontes, Katarina Banasova, Tanja Novakovic, John Yfantopoulos, Janet Wale, Irene Langner, Hans Piepenbrink, Christian Hierländer, Peter Skiold, Guenka Petrova, Magdalene Wladysiuk, Amanj Kurdi, Vincent de Valk, Stephen Campbell, Anna Nachtnebel, Admir Malaj, Roberta Joppi, Angela Timoney, Maria Juhasz-Haverinen, Antony P. Martin, Jolanta Gulbinovič, Merce Obach Cortadellas, Iris Hoxha, Arianit Jakupi, Durhane Wong-Rieger, Catherine Sermet, D Tomek, Gisbert Selke, Eleonora Allocati, Ieva Greiciute-Kuprijanov, Tomasz Bochenek, Steven Simoens, and Robert Plisko
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Oncology ,medicine.medical_specialty ,Scrutiny ,Population size ,Biosimilar ,Pharmacy ,RS ,Drug Guides ,Internal medicine ,Value (economics) ,Sustainability ,medicine ,Per capita ,Business ,health care economics and organizations ,Health policy ,Economic power - Abstract
Introduction/Objectives: Health authorities are facing increasing challenges to the sustainability of their healthcare systems because of the growing expenditures on medicines, including new, high-priced oncology medicines, and changes in disease prevalence in their ageing populations. Medicine prices in European countries are greatly affected by the ability to negotiate reasonable prices. Concerns have been expressed that prices of patented medicines do not fall sufficiently after the introduction of lower-cost generic oncology medicines. The objective of this study was to examine the associations over time in selected European countries between the prices of oral oncology medicines, population size, and gross domestic product (GDP) before and after the introduction of generic versions. Evidence of periodic reassessments of the price, value, and place in treatment of these medicines was also looked for. The goal of this review was to stimulate debate about possible improvements in approaches to reimbursement negotiations. Methodology: Analysis was performed of reimbursed prices of three oral oncology medicines (imatinib, erlotinib and fludarabine) between 2013 and 2017 across Europe. Correlations were explored between GDP, population size, and prices. Findings were compared with previous research regarding prices of generic oral oncology medicines. Results: The prices of imatinib, erlotinib and fludarabine varied among European countries, and there was limited price erosion over time in the absence of generics. There appeared to be no correlation between population size and price, but higher prices of on-patent oral cancer medicines were seen among countries with higher GDP per capita. Conclusion: Limited price erosion for patented medicines contributed to increases in oncology medicine budgets across the region. There was also a concerning lack of evidence re-assessments of the price, value, and place in treatment of patented oncology medicines following the loss of patent protection of standard medicines. The use of such proactive re-assessments in negotiating tactics might positively impact global expenditures for oncology medicines.
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- 2021
13. Potential approaches for the pricing of cancer medicines across Europe to enhance the sustainability of healthcare systems and the implications
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Ruaraidh Hill, Christian Hierländer, Carolina Zampirolli Dias, Tomasz Bochenek, Ott Laius, Lars L. Gustafsson, Tracey-Lea Laba, Arianit Jakupi, Øyvind Melien, Wija Oortwijn, Luka Voncina, Durhane Wong-Rieger, Caridad Pontes, Jf Hans Piepenbrink, Magdalene Wladysiuk, Guenka Petrova, Patricia Vella Bonanno, Corinne Zara, Robert Sauermann, Steven Simoens, Olayinka O Ogunleye, Amanj Kurdi, Wouter Hamelinck, Wania Cristina Silva, Dzintars Gotham, Seung Jin Bae, Johanna C Meyer, Roberta Joppi, Janet Wale, Admir Malaj, John Yfantopoulos, Gisbert Selke, Angela Timoney, Brian Godman, Vincent de Valk, Andrew Hill, Merce Obach Cortadellas, D Tomek, Hye-Young Kwon, Irene Langner, Jurij Fürst, Iva Selke Krulichová, Antony P. Martin, Jolanta Gulbinovič, Iris Hoxha, Eleonora Allocati, Stuart McTaggart, Ieva Greiciute-Kuprijanov, Vanda Marković-Peković, Ileana Mardare, Godman, Brian, Hill, Andrew, Simoens, Steven, Selke, Gisbert, Laba, Tracey-Lea, and Hill, Ruaraidh
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Transparency (market) ,Amortization (business) ,Medical care -- Cost control ,Alternative pricing approaches ,cancer medicines ,europe ,managed entry agreements ,minimum effectiveness criteria ,multicriteria decision analyses ,payers ,tiered pricing approaches ,transparent pricing approaches ,0302 clinical medicine ,Neoplasms ,Health care ,Pharmacology (medical) ,Confidentiality ,030212 general & internal medicine ,Pharmacology & Pharmacy ,Reimbursement ,health care economics and organizations ,Public economics ,030503 health policy & services ,Health Policy ,General Medicine ,Europe ,Models, Economic ,Value (economics) ,Health Policy & Services ,Costs and Cost Analysis ,0305 other medical science ,Life Sciences & Biomedicine ,Scrutiny ,Cancer -- Treatment -- Europe ,Antineoplastic Agents ,Medical care -- Cost control -- Europe ,Drug Costs ,Patents as Topic ,Reimbursement Mechanisms ,03 medical and health sciences ,Drug Development ,Humans ,Drugs -- Law and legislation -- Decision making ,1115 Pharmacology and Pharmaceutical Sciences, 1117 Public Health and Health Services, 1402 Applied Economics ,Science & Technology ,business.industry ,lnfectious Diseases and Global Health Radboud Institute for Health Sciences [Radboudumc 4] ,Health Care Sciences & Services ,Sustainability ,Business ,RA ,Delivery of Health Care - Abstract
Introduction: There are growing concerns among European health authorities regarding increasing prices for new cancer medicines, prices not necessarily linked to health gain and the implications for the sustainability of their healthcare systems. Areas covered: Narrative discussion principally among payers and their advisers regarding potential approaches to the pricing of new cancer medicines. Expert opinion: A number of potential pricing approaches are discussed including minimum effectiveness levels for new cancer medicines, managed entry agreements, multicriteria decision analyses (MCDAs), differential/tiered pricing, fair pricing models, amortization models as well as de-linkage models. We are likely to see a growth in alternative pricing deliberations in view of ongoing challenges. These include the considerable number of new oncology medicines in development including new gene therapies, new oncology medicines being launched with uncertainty regarding their value, and continued high prices coupled with the extent of confidential discounts for reimbursement. However, balanced against the need for new cancer medicines. This will lead to greater scrutiny over the prices of patent oncology medicines as more standard medicines lose their patent, calls for greater transparency as well as new models including amortization models. We will be monitoring these developments., peer-reviewed
- Published
- 2021
14. Review of 11 national policies for rare diseases in the context of key patient needs
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Durhane Wong-Rieger, Matthew Harold, Sharon F. Terry, and Safiyya Dharssi
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0301 basic medicine ,medicine.medical_specialty ,Economic growth ,Asia ,Orphan Drug Production ,Legislation ,lcsh:Medicine ,Context (language use) ,Review ,Orphan Drug Act of 1983 ,030105 genetics & heredity ,Patient advocacy ,Orphan drug ,03 medical and health sciences ,Rare Diseases ,0302 clinical medicine ,medicine ,media_common.cataloged_instance ,Genetics(clinical) ,Pharmacology (medical) ,European union ,Genetics (clinical) ,media_common ,Medicine(all) ,business.industry ,Health Policy ,Public health ,Environmental resource management ,lcsh:R ,1. No poverty ,General Medicine ,South America ,Legislation, Drug ,United States ,3. Good health ,Europe ,Policy ,North America ,Business ,030217 neurology & neurosurgery ,Rare disease ,National rare disease plan - Abstract
Rare diseases collectively exert a global public health burden in the severity of their manifestations and the total number of people they afflict. For many patients, considerable barriers exist in terms of access to appropriate care, delayed diagnosis and limited or non-existing treatment options. Motivated by these challenges, the rare disease patient community has played a critical role, elevating the patient voice and mobilizing legislation to support the development of programs that address the needs of patients with rare diseases. The US Orphan Drug Act of 1983 served as a key milestone in this journey, providing a roadmap for other countries to introduce and implement similar orphan drug legislation; more recently, the European Union (EU) has gone further to encourage the widespread adoption and implementation of rare disease plans or strategies designed to more adequately address the comprehensive needs of patients with rare diseases. Despite these legislative efforts and the growing contributions of patient advocacy groups in moving forward implementation and adoption of rare disease programs, gaps still exist across the policy landscape for several countries. To gain deeper insights into the challenges and opportunities to address key needs of rare disease patients, it is critical to define the current status of rare disease legislation and policy across a geographically and economically diverse selection of countries. We analyzed the rare disease policy landscape across 11 countries: Germany, France, the United Kingdom, Canada, Bulgaria, Turkey, Argentina, Mexico, Brazil, China, and Taiwan. The status and implementation of policy was evaluated for each country in the context of key patient needs across 5 dimensions: improving coordination of care, diagnostic resources, access to treatments, patient awareness and support, and promoting innovative research. Our findings highlight the continuing role of the patient community in driving the establishment and adoption of legislation and programs to improve rare disease care. Further, we found that while national rare disease plans provide important guidance for improving care, implementation of plans is uneven across countries. More research is needed to demonstrate the effect of specific elements of rare disease plans on patient outcomes.
- Published
- 2017
15. Moving from Patient Advocacy to Partnership: A Long and Bumpy Road
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Durhane Wong-Rieger
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Health economics ,business.industry ,030503 health policy & services ,Patient Advocacy ,Four quadrants ,Public relations ,Collective action ,Patient advocacy ,Health administration ,Variety (cybernetics) ,03 medical and health sciences ,Grassroots ,0302 clinical medicine ,General partnership ,Political science ,Humans ,030212 general & internal medicine ,Patient Participation ,0305 other medical science ,business - Abstract
Real-life experiences of grassroots patient organizations across a variety of diseases, countries and contexts have been used to develop a four-mode framework of the transition from patient advocacy to partnership, defined by one axis as individual versus collective action and the other axis as activities 'outside' or 'inside' the system. The four quadrants are labeled as advocacy, activism, reform and broker, and engagement is further refined by whether the participation is 'pushed' by the group or 'pulled' by the system. There are many examples of patient advocacy groups transitioning through the four quadrants; however, depending on other factors of culture, opportunity and their own preferences, groups may work primarily through one or two quadrants.
- Published
- 2017
16. Additional file 1: of Model consent clauses for rare disease research
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Nguyen, Minh, Goldblatt, Jack, Isasi, Rosario, Jagut, Marlene, Anneliene Jonker, Kaufmann, Petra, Ouillade, Laetitia, Fruszina Molnar-Gabor, Shabani, Mahsa, Sid, Eric, TassĂŠ, Anne, Durhane Wong-Rieger, and Bartha Knoppers
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MCC Report of the Model Consent Clauses Task Force Meeting (Paris, September 6â 7, 2018). (DOCX 138 kb)
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- 2019
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17. Familial hypercholesterolaemia patient support groups and advocacy: A multinational perspective
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Marlieke Janssen ten Haaf, Jules Payne, Luba Cermakova, Angela Covato, Ma Teresa Pariente, Simon Williams, Diana Maxwell, Raquel Arroyo Olivares, Hilary Wong-Rieger, Durhane Wong-Rieger, Katherine Wilemon, and Fritz Rieger
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Male ,medicine.medical_specialty ,Health Knowledge, Attitudes, Practice ,Attitude of Health Personnel ,International Cooperation ,Patient Advocacy ,030204 cardiovascular system & hematology ,Scientific expertise ,Patient advocacy ,Health Services Accessibility ,Hyperlipoproteinemia Type II ,03 medical and health sciences ,0302 clinical medicine ,Patient Education as Topic ,Prevalence ,Medicine ,Humans ,Genetic Predisposition to Disease ,030212 general & internal medicine ,Cooperative Behavior ,Lipoprotein cholesterol ,Physician-Patient Relations ,business.industry ,Perspective (graphical) ,Middle Aged ,Coronary heart disease ,Europe ,Patient support ,Self-Help Groups ,Phenotype ,Health Communication ,Multinational corporation ,Family medicine ,North America ,Female ,Interdisciplinary Communication ,Patient Participation ,Cardiology and Cardiovascular Medicine ,business ,Patient organisations - Abstract
Familial hypercholesterolaemia (FH) is an autosomal-dominant disorder associated with high low-density lipoprotein cholesterol (LDL-C). Left untreated, 50% of men with FH will develop coronary heart disease by the age of 50 and 30% of women by the age 60 [1,2]. It is estimated that the prevalence may be as high as one in 250 people, with most undiagnosed. This article explores the development of advocacy in FH patient organisations, citing examples from Canada, the Netherlands, Spain, the US and the UK as well as the pan-European patient organisation, FH Europe. The article demonstrates that for patient advocacy, the link with medical and scientific expertise is essential to ensure that advocacy for familial hypercholesterolaemia is well-founded and credible and that patient associations are prepared to take a long-term view on achieving improvements in identification and treatment.
- Published
- 2018
18. Validation of the Social Interaction Anxiety Scale in scleroderma: A Scleroderma Patient-centered Intervention Network cohort study
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Geneviève Gyger, David Robinson, Ghassan El-Baalbaki, Susan J. Bartlett, Niall Jones, Robyn T. Domsic, Angela Costa Maia, Patricia Carreira, Carter Thorne, Alexandra Albert, Luc Mouthon, Mia Pépin, Frank J. A. van den Hoogen, Evelyn Sutton, Maria E. Suarez-Almazor, Carolyn Ells, Linda Kwakkenbos, Lyne Bissonnette, Maureen Sauve, Christopher Denton, Cornelia H. M. van den Ende, Daniel E. Furst, Murray Baron, Catarina Leite, Monique Hinchcliff, Brooke Levis, Shervin Assassi, Artur José de Brum Fernandes, Tatiana Sofia Rodriguez Reyna, Yeona Jang, Marie Hudson, Gilles Boire, Carlo A. Marra, Robert Riggs, Ariane L. Herrick, Tracy M. Frech, Ariel Masetto, Sarah D. Mills, Suzanne Kafaja, Robert Spiera, Pearce G. Wilcox, Daphna Harel, Vanessa C. Delisle, Rina S. Fox, Isabelle Boutron, Sindhu R. Johnson, Karen Nielsen, Patrick Liang, Warren R. Nielson, Serge Poiraudeau, Marie Eve Carrier, Dominique Godard, Lisa R. Jewett, Doug Smith, Brett D. Thombs, Fredrick M. Wigley, Nader Khalidi, Scott C. Roesch, Joep Welling, Joanne Manning, Maureen D. Mayes, Paul R. Fortin, Alena Ikic, Durhane Wong-Rieger, Karen Gottesman, Shadi Gholizadeh, Benjamin D. Korman, Janet E. Pope, James V. Dunne, Jennifer Persmann, Anna Gill, Vanessa L. Malcarne, Guylaine Arsenault, Lorinda Chung, Sophie Roux, Alexandra Portales, Virginia D. Steen, Pierre Dagenais, Kim Fligelstone, Ann Tyrell Kennedy, Russell Steele, Ann Impens, Alessandra Bruns, Claire Fedoruk, John Varga, Maggie Larché, Jessica K. Gordon, Catherine Fortune, Anne A. Schouffoer, and Universidade do Minho
- Subjects
medicine.medical_specialty ,Immunology ,education ,Scleroderma ,Experimental Psychopathology and Treatment ,03 medical and health sciences ,0302 clinical medicine ,0504 sociology ,Rheumatology ,Intervention (counseling) ,medicine ,Immunology and Allergy ,Original Research Article ,Psychiatry ,health care economics and organizations ,030203 arthritis & rheumatology ,Social anxiety ,business.industry ,05 social sciences ,050401 social sciences methods ,medicine.disease ,Social relation ,humanities ,3. Good health ,Systemic sclerosis ,business ,Psychosocial ,Anxiety scale ,Psychometric ,Cohort study ,Patient centered - Abstract
Introduction: Individuals with visible differences due to medical conditions, such as systemic sclerosis (SSc; scleroderma), have reported difficulty navigating social situations because of issues such as staring, invasive questions, and rude comments. Fears or anxiety linked to situations in which a person interacts with others is known as social interaction anxiety. However, there exists no validated measurement tool to examine social interaction anxiety in rheumatologic conditions. Methods: The present study examines the reliability (internal consistency) and validity (structural and convergent) of the Social Interaction Anxiety Scale-6 (SIAS-6) in a sample of 802 individuals with SSc, and compares these psychometric properties across limited and diffuse subtypes of the disease. Multi-group confirmatory factor analysis was used to examine the factor structure of the SIAS-6 in patients with both limited and diffuse SSc. Results: A one-factor structure was found to fit well for individuals with SSc with both limited and diffuse disease. The measure demonstrated strong internal consistency reliability and convergent validity with relevant measures in expected magnitudes and directions. Conclusions: The SIAS-6 is a psychometrically robust measure that can confidently be used in SSc populations to examine social interaction anxiety. Moreover, scores can meaningfully be compared between patients with limited and diffuse disease., MD Anderson Cancer Center - University of Texas MD Anderson Cancer Center(undefined), Financial support: The Scleroderma Patient-centered Intervention Network (SPIN) is funded by a Canadian Institutes of Health Research (CIHR) Emerging Team Grant for Rare Diseases (PI, Thombs; TR3-119192). In addition to CIHR funding, SPIN has received institutional contributions from the Lady Davis Institute for Medical Research of the Jewish General Hospital, Montréal, Canada and from McGill University, Montréal, Canada. SPIN has also received support from the Scleroderma Society of Ontario, Scleroderma Canada, and Sclérodermie Québec. Ms. Gholizadeh’s work on this project was supported by a Rheumatology Research Foundation: Health Professional Research Preceptorship. Dr. Kwakkenbos was supported by a CIHR Banting Postdoctoral Fellowship. Ms. Jewett was supported by a CIHR Doctoral Research Award. Dr. Thombs was supported by an Investigator Salary Award from the Arthritis Society
- Published
- 2018
19. An Asia Pacific Alliance for Rare Diseases
- Author
-
Lucy Hickinbotham, William Claxton, Richard Vines, Durhane Wong-Rieger, Kin Ping Tsang, and Carmencita Padilla
- Subjects
medicine.medical_specialty ,Economic growth ,Asia ,Latin Americans ,Health Policy ,International Cooperation ,Public health ,Legislation ,Pacific Islands ,Health Services Accessibility ,Orphan drug ,Rare Diseases ,Alliance ,Political science ,medicine ,Humans ,National Policy ,Policy Making ,Health policy ,Rare disease - Abstract
Rare disease organizations representing small patient populations have had great impact in helping to secure orphan drug and rare disease legislation by joining forces, in the USA as a national alliance (National Organization for Rare Disorders) and in Europe as a regional alliance (European Organization for Rare Disorders), with a focus on affecting policy [1–3]. In the rest of the world, rare disease alliances have been slower to form and, for the most part, have had less visible impact on national policy. Notable exceptions are patient associations in Taiwan and Japan in the Asia-Pacific region and very recently the alliance in Colombia in Latin America. Through regional and international rare disease conferences and forums, rare disease associations have had opportunities to meet, to discuss common concerns, and to acknowledge their limited individual resources but potentially ‘significant’ collective capabilities. This paper reports on an initiative to establish an alliance of Asia-Pacific organizations, building on the efforts of national alliances and disease-specific groups in each country, with the collective goal of influencing rare disease policy and practice throughout the region.
- Published
- 2014
20. Discussion: Patient Participation in HTA—Evidence of Real Change?
- Author
-
Durhane Wong-Rieger
- Subjects
business.industry ,media_common.quotation_subject ,Best practice ,education ,Perspective (graphical) ,Public relations ,Patient organization ,Part iii ,03 medical and health sciences ,0302 clinical medicine ,030220 oncology & carcinogenesis ,Political science ,Patient input ,Ideology ,Patient participation ,business ,030215 immunology ,media_common ,Healthcare system - Abstract
Only a few years ago, it was unlikely we would find enough evidence of patient involvement in HTA to fill a chapter, let alone a whole book. Clearly, progress has been made, and undoubtedly there will be much more to come; nevertheless, it may be timely to ask: How much real change has taken place in HTA bodies and, as importantly, what has been the impact? This chapter explores this question by considering the evidence from the various countries and/or regions presented in Part III. My own experience, working with patient organizations in Canada and internationally via IAPO, allows me to critically review processes from the perspective of patient advocates who are keen to be involved in HTA processes. First, there are systematic similarities and differences in the ways in which patients are participating in HTA reflecting ideological, developmental, and cultural factors. Second, the goals of stakeholders for patient participation vary both within a healthcare system and across systems, with some goals naturally more conducive to patient involvement than others. Third, there are conditions that support or detract from patient participation in HTA, and examination suggests some best practices that we can build upon.
- Published
- 2017
21. Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases
- Author
-
Denise Avard, Conrad V. Fernandez, Durhane Wong-Rieger, Erika Kleiderman, Kym M Boycott, Bartha Maria Knoppers, Shelin Adam, Julie Richer, and Gail Ouellette
- Subjects
Adult ,Male ,Parents ,medicine.medical_specialty ,Genetic Research ,Health (social science) ,Adolescent ,media_common.quotation_subject ,Genomic research ,Best practice ,Research Ethics ,Pediatrics ,03 medical and health sciences ,Young Adult ,Rare Diseases ,Arts and Humanities (miscellaneous) ,Disease severity ,medicine ,Humans ,Risks and benefits ,Psychiatry ,Child ,030304 developmental biology ,media_common ,0303 health sciences ,Enthusiasm ,Incidental Findings ,business.industry ,Health Policy ,030305 genetics & heredity ,Middle Aged ,Research findings ,Focus group ,3. Good health ,Issues, ethics and legal aspects ,Family medicine ,Child, Preschool ,Female ,Thematic analysis ,business - Abstract
Purpose To explore parental perceptions and experiences regarding the return of genomic incidental research findings in children with rare diseases. Methods Parents of children affected by various rare diseases were invited to participate in focus groups or individual telephone interviews in Montreal and Ottawa. Fifteen participants were interviewed and transcriptions were analysed using thematic analysis. Results Four emergent themes underscored parental enthusiasm for receiving incidental findings concerning their child’s health: (1) right to information; (2) perceived benefits and risks; (3) communication practicalities: who, when, and how; and (4) service needs to promote the communication of incidental findings. Parents believed they should be made aware of all results pertaining to their child’s health status, and that they are responsible for transmitting this information to their child, irrespective of disease severity. Despite potential negative consequences, respondents generally perceived a favourable risk-benefit ratio in receiving all incidental findings. Conclusions Understanding how parents assess the risks and benefits of returning incidental findings is essential to genomic research applications in paediatric medicine. The authors believe the study findings will contribute to establishing future best practices, although further research is needed to evaluate the impact of parental decisions on themselves and their child.
- Published
- 2013
22. Validation and reliability of a disease-specific quality of life measure (the TranQol) in adults and children with thalassaemia major
- Author
-
Linda M. Vickars, Nancy L. Young, Elliott Vichinsky, Durhane Wong-Rieger, Nancy Sweeters, Robert Yamashita, Nick Barrowman, Janet L. Kwiatkowski, Manuela Merelles-Pulcini, Robert J. Klaassen, Melanie Kirby-Allen, Melissa Forgie, Ellis J. Neufeld, John K. Wu, and Victor S. Blanchette
- Subjects
Adult ,Male ,Disease specific ,medicine.medical_specialty ,Pediatrics ,Future studies ,Adolescent ,Severity of Illness Index ,Young Adult ,Quality of life ,Surveys and Questionnaires ,Humans ,Medicine ,Child ,Reliability (statistics) ,Thalassaemia major ,business.industry ,beta-Thalassemia ,Reproducibility of Results ,Mean age ,Hematology ,Middle Aged ,Quality of Life ,Physical therapy ,Female ,business ,Health Utilities Index - Abstract
This study aimed to demonstrate the validity, reliability and responsiveness of a new disease-specific quality of life (QoL) questionnaire for children and adults with thalassaemia major, the Transfusion-dependent QoL questionnaire (TranQol). 106 participants (51 adults and 55 children) were recruited from six North American thalassaemia treatment centres with a mean age of 20·7 years (standard deviation [SD] 9, range 7-51 years). The mean total TranQol score was 71 (SD 17, 32-97) on a scale of 0-100. Patients with co-morbidities had significantly lower scores (63 vs. 75, P = 0·001). TranQol scores showed substantial agreement (P < 0·001) with the Health Utilities Index Mark 3 (all patients, r = 0·65), the Pediatric QoL (children, r = 0·77) and the Short Form (36) physical (adults, r = 0·69) and mental summary scores (r = 0·76). In the subgroup who rated their QoL as better, there was a 4·0 point (SD 9·0) improvement in TranQol scores, from baseline of 67·1-71·1 one week later (P = 0·008). Test-retest reliability was excellent (intra-class correlation coefficient, 0·93). The TranQol was valid, with acceptable correlation for all administered measures and was reliable and responsive to change. The TranQol can be incorporated into future studies of thalassaemia major.
- Published
- 2013
23. ASPECTS OF PATIENT REPORTED OUTCOMES IN RARE DISEASES: A DISCUSSION PAPER
- Author
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Deborah Elstein, Gordon H. Guyatt, Alric Rüther, and Durhane Wong-Rieger
- Subjects
medicine.medical_specialty ,Health Status ,Patient advocacy ,law.invention ,03 medical and health sciences ,0302 clinical medicine ,Rare Diseases ,Randomized controlled trial ,law ,medicine ,Humans ,030212 general & internal medicine ,Patient Reported Outcome Measures ,Intensive care medicine ,business.industry ,030503 health policy & services ,Health Policy ,Health condition ,Reproducibility of Results ,Small sample ,Health Surveys ,Clinical trial ,Assessment methods ,Quality of Life ,Patient-reported outcome ,0305 other medical science ,business ,Rare disease - Abstract
Objectives: A patient reported outcome (PRO) is “any report of the status of a patient's health condition that comes directly from the patient without interpretation of the patient's response by a clinician or anyone else” (USFDA 2009). PROs are discussed widely, and many regard the patients’ perspective on treatment benefit as very valuable. Although many PROs have shown satisfactory measurement properties including reliability, validity, and responsiveness, there is great concern about risk of bias, that is, in clinical trials.Methods: Differences in perspectives of PRO measurement in rare diseases are given arising from methodology, clinical, HTA, and patient advocacy views.Results: PROs are playing an important role in dealing with treatment benefit especially in small sample size as occurring often in rare diseases. Challenges remain especially regarding lack of responsiveness of generic measures, limited capture of all patient relevant aspects, study design and high risk of bias.Conclusions: PROs seem a valuable instrument to detect patient relevant aspects in rare diseases. They should be seen in addition to other approved assessment methods as randomized controlled trials but not as their substitute.
- Published
- 2016
24. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort
- Author
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Lisa R. Jewett, Linda Kwakkenbos, Marie-Eve Carrier, Vanessa L. Malcarne, Diana Harcourt, Nichola Rumsey, Maureen D. Mayes, Shervin Assassi, Annett Körner, Rina S. Fox, Shadi Gholizadeh, Sarah D. Mills, Catherine Fortune, Alexandra Portales, Brett D. Thombs, Murray Baron, Susan J. Bartlett, Dan Furst, Karen Gottesman, Frank van den Hoogen, Luc Mouthon, Warren R. Nielson, Serge Poiraudeau, Robert Riggs, Maureen Sauve, Fredrick Wigley, Isabelle Boutron, Angela Costa Maia, Ghassan El-Baalbaki, Carolyn Ells, Cornelia van den Ende, Kim Fligelstone, Tracy Frech, Dominique Godard, Daphna Harel, Marie Hudson, Ann Impens, Yeona Jang, Sindhu R. Johnson, Ann Tyrell Kennedy, Dinesh Khanna, Maggie Larche, Catarina Leite, Carlo Marra, Karen Nielsen, Janet L. Poole, Janet Pope, Tatiana Sofia Rodriguez Reyna, Anne A. Schouffoer, Russell J. Steele, Maria E. Suarez-Almazor, Joep Welling, Durhane Wong-Rieger, Alexandra Albert, Guylaine Arsenault, Lyne Bissonnette, Gilles Boire, Alessandra Bruns, Patricia Carreira, Lorinda Chung, Pierre Dagenais, Christopher Denton, Robyn Domsic, James V. Dunne, Paul Fortin, Anna Gill, Jessica Gordon, Genevieve Gyger, Ariane L. Herrick, Monique Hinchcliff, Alena Ikic, Niall Jones, Artur Jose de B. Fernandes, Suzanne Kafaja, Nader Khalidi, Benjamin Korman, Patrick Liang, Joanne Manning, Ariel Masetto, David Robinson, Sophie Roux, Elena Schiopu, Doug Smith, Robert Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, John Varga, Pearce Wilcox, Vanessa C. Delisle, Claire Fedoruk, Brooke Levis, Mia R. Pepin, and Jennifer Persmann
- Subjects
Adult ,Male ,050103 clinical psychology ,medicine.medical_specialty ,Social Psychology ,Psychometrics ,Experimental Psychopathology and Treatment ,03 medical and health sciences ,0302 clinical medicine ,Cronbach's alpha ,Surveys and Questionnaires ,medicine ,Body Image ,Humans ,0501 psychology and cognitive sciences ,General Psychology ,Applied Psychology ,Reliability (statistics) ,Aged ,030203 arthritis & rheumatology ,Scleroderma, Systemic ,05 social sciences ,Construct validity ,Reproducibility of Results ,Middle Aged ,Disfigurement ,Differential item functioning ,Confirmatory factor analysis ,Distress ,Cohort ,Physical therapy ,Female ,Psychology - Abstract
Item does not contain fulltext Body concealment is an important component of appearance distress for individuals with disfiguring conditions, including scleroderma. The objective was to replicate the validation study of the Body Concealment Scale for Scleroderma (BCSS) among 897 scleroderma patients. The factor structure of the BCSS was evaluated using confirmatory factor analysis and the Multiple-Indicator Multiple-Cause model examined differential item functioning of SWAP items for sex and age. Internal consistency reliability was assessed via Cronbach's alpha. Construct validity was assessed by comparing the BCSS with a measure of body image distress and measures of mental health and pain intensity. Results replicated the original validation study, where a bifactor model provided the best fit. The BCSS demonstrated strong internal consistency reliability and construct validity. Findings further support the BCSS as a valid measure of body concealment in scleroderma and provide new evidence that scores can be compared and combined across sexes and ages. 8 p.
- Published
- 2016
25. Involving Patients in Hospital-Based HTA: Experiences, Approaches, and Future Directions
- Author
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Marie-Pierre Gagnon, Durhane Wong-Rieger, Russel McGowan, and Janet Wale
- Subjects
End user ,business.industry ,030503 health policy & services ,media_common.quotation_subject ,education ,Hospital based ,Public involvement ,Transparency (behavior) ,03 medical and health sciences ,0302 clinical medicine ,Nursing ,Accountability ,Health care ,Experiential knowledge ,030212 general & internal medicine ,0305 other medical science ,Empowerment ,Psychology ,business ,media_common - Abstract
Policy makers, healthcare managers, and HTA producers are increasingly interested in exploring strategies for involving the public and patients in HTA activities [1, 7]. While public involvement in HTA can be a response to the need for more transparency and accountability in decisions regarding funding of drugs, devices, and healthcare procedures [1, 20], patient involvement in HTA can be seen as a way to enhance the relevance of the technologies and services that are provided by considering end users’ needs and values [8, 23]. Experiential knowledge regarding a particular health condition or the use of a given technology can be gained through patient consultation, including direct patient input [12, 30]. Furthermore, involving patients in health decision-making promotes their empowerment and can improve adherence to therapy and/or reporting of adverse effects, which could ultimately improve their health and well-being [30, 33].
- Published
- 2016
26. OP100 How Health Technology Assessment Is Adapting To Orphan Drugs In Canada – Not!
- Author
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Durhane Wong-Rieger and Ferg Mills
- Subjects
Orphan drug ,03 medical and health sciences ,medicine.medical_specialty ,0302 clinical medicine ,030503 health policy & services ,Health Policy ,Family medicine ,medicine ,Health technology ,030212 general & internal medicine ,Business ,0305 other medical science - Abstract
INTRODUCTION:Some countries have distinct pathways for drugs for rare diseases (DRDs) (1). In May 2014, the Canadian Agency for Technologies in Health (CADTH) rejected the option of a separate review pathway for DRDs, reiterating that “pharmacoeconomic analyses are critical for all types of drugs”. While the gap between positive recommendations for common and rare drugs may have narrowed, the rejection for DRDs is still proportionally much higher (2). The default has been to provincially negotiate drug access, for patient populations, subgroups or individuals. Still not wishing to create a separate pathway, in March 2016, CADTH produced a revised evaluation framework for “uncertain clinical and pharmacoeconomic evidence” and other considerations representing “significant unmet need” including rarity and difficulty to study because of small patient population”(3). This study analyzes recommendations for DRDs following the two CADTH revisions.METHODS:Methods used were: synthesis of previously conducted analyses of CADTH recommendations for rare and non-rare drugs, primary comparative analysis of CADTH recommendations for DRDs from 2004 to 2016, and qualitative analysis of two drugs submitted for both rare and non-rare conditions: everolimus (breast cancer, pancreatic neuroendocrine tumours, and tuberous sclerosis complex) and ibrutinib (chronic lymphocytic leukemia, small lymphocytic lymphoma, and Waldenström's Macroglobulinemia).RESULTS:Previous analyses found that DRDs received more negative recommendations than did non-rare drugs; both clinical and economic evidence were differentiating factors. The primary analysis provided an additional understanding of reasons for negative recommendations. There is low consistency across assessments and across the two CADTH review committees. The case studies illustrated the challenges for DRDs to overcome barriers of cost-effectiveness and certainty of clinical evidence, even with the revised framework.CONCLUSIONS:This research challenges the premise that Health Technology Assessment for all drugs can result in fair and equitable recommendations for DRDs. Moreover, assessments based on “significant unmet need” do not appear to provide consistent or equitable guidelines for addressing the issues specific to rare diseases.
- Published
- 2017
27. Changes in Patient Knowledge, Attitudes and Usage Preferences Regarding Biosimilars: Focus on Diabetes
- Author
-
Durhane Wong-Rieger
- Subjects
Focus (computing) ,Medical education ,business.industry ,Endocrinology, Diabetes and Metabolism ,030209 endocrinology & metabolism ,Biosimilar ,General Medicine ,medicine.disease ,03 medical and health sciences ,0302 clinical medicine ,Endocrinology ,Diabetes mellitus ,Internal Medicine ,medicine ,In patient ,030212 general & internal medicine ,business - Published
- 2018
28. Global Coalition for the Fight Against Heart Disease and Stroke: A Global Coalition for WHF Second Global Summit on Circulatory Health
- Author
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Helen McGuire, David R. Wood, Floris Italianer, Jeremiah Mwangi, Jack Tan Wei Chieh, Lyndsey Canham, Samira Asma, Durhane Wong-Rieger, Etienne G. Krug, Joanna Markbreiter, Rohan Greenland, Douglas Bettcher, Alastair White, and Jean-Luc Eiselé
- Subjects
medicine.medical_specialty ,Heart Diseases ,Heart disease ,Epidemiology ,MEDLINE ,030204 cardiovascular system & hematology ,Global Health ,03 medical and health sciences ,0302 clinical medicine ,Global health ,medicine ,Humans ,030212 general & internal medicine ,Intensive care medicine ,Stroke ,Societies, Medical ,Community and Home Care ,geography ,Summit ,geography.geographical_feature_category ,business.industry ,Congresses as Topic ,medicine.disease ,Survival Rate ,Circulatory system ,Morbidity ,Cardiology and Cardiovascular Medicine ,business - Published
- 2018
29. Referee report. For: Twittering About Research: A Case Study of the World’s First Twitter Poster Competition [version 1; referees: 2 approved]
- Author
-
Durhane Wong-Rieger
- Published
- 2015
- Full Text
- View/download PDF
30. Quality indicators as a tool in improving the introduction of new medicines
- Author
-
Jurij Fürst, Gisbert Selke, Lars L. Gustafsson, Durhane Wong-Rieger, Björn Wettermark, Rickard E. Malmström, Stephen Campbell, Menno van Woerkom, Brian Godman, Vera Vlahović-Palčevski, Sean MacBride-Stewart, Eduardo Diogene, and Hanne Bak Pedersen
- Subjects
Pharmacology ,Protocol (science) ,Data collection ,Cost–benefit analysis ,Unintended consequences ,business.industry ,Cost-Benefit Analysis ,media_common.quotation_subject ,Environmental resource management ,quality indicators ,General Medicine ,Toxicology ,Health Services Accessibility ,RS ,Pharmaceutical Preparations ,Risk analysis (engineering) ,Professional learning community ,Remuneration ,Humans ,Medicine ,Quality (business) ,business ,Quality Indicators, Health Care ,Accreditation ,media_common - Abstract
Quality indicators are increasingly used as a tool to achieve safe and quality clinical care, cost-effective therapy, for professional learning, remuneration, accreditation and financial incentives. A substantial number focus on drug therapy but few address the introduction of new medicines even though this is a burning issue. The objective was to describe the issues and challenges in designing and implementing a transparent indicator framework and evaluation protocol for the introduction of new medicines and to provide guidance on how to apply quality indicators in the managed entry of new medicines. Quality indicators need to be developed early to assess whether new medicines are introduced appropriately. A number of key factors need to be addressed when developing, applying and evaluating indicators including dimensions of quality, suggested testing protocols, potential data sources, key implementation factors such as intended and unintended consequences, budget impact and cost- effectiveness, assuring the involvement of the medical professions, patients and the public, and reliable and easy-to-use computerized tools for data collection and management. Transparent approaches include the need for any quality indicators developed to handle conflict of interests to enhance their validity and acceptance. The suggested framework and indicator testing protocol may be useful in assessing the applicability of indicators for new medicines and may be adapted to healthcare settings worldwide. The suggestions build on existing literature to create a field testing methodology that can be used to produce country- specific quality indicators for new medicines as well as a cross international approach to facilitate access to new medicines.
- Published
- 2015
31. Referee report. For: The role of globalization in drug development and access to orphan drugs: orphan drug legislation in the US/EU and in Latin America [v1; indexed, http://f1000r.es/3ix]
- Author
-
Durhane Wong-Rieger
- Published
- 2015
- Full Text
- View/download PDF
32. Influencing Consumer Cross-Border Internet Pharmacy Shopping Behavior
- Author
-
Durhane Wong-Rieger
- Subjects
Marketing ,Legal status ,business.industry ,education ,Pharmacy ,Advertising ,Public relations ,Focus group ,Risk perception ,Harm ,Medicine ,The Internet ,Medical prescription ,business ,Social cognitive theory - Abstract
This paper draws upon published literature, focus groups, workshops, and individual patient views to identify general use of Internet for health information and, specifically, use of cross-border Internet pharmacy Web sites to locate and purchase prescription drugs. The paper applies the theoretical frameworks of risk perception theory and social cognition theory to attempt to explain why American patients continue to shop for prescription medications through cross-border Internet pharmacies (CBIP) despite its questionable legal status and potential for serious harm.
- Published
- 2004
33. Not Surprising: Patients Not Engaged and Not Using Public Healthcare Quality Information
- Author
-
Durhane Wong-Rieger
- Subjects
Male ,medicine.medical_specialty ,020205 medical informatics ,Status quo ,media_common.quotation_subject ,02 engineering and technology ,Choice Behavior ,Health administration ,03 medical and health sciences ,Health care ,0202 electrical engineering, electronic engineering, information engineering ,medicine ,Humans ,Quality (business) ,Patient participation ,Quality Indicators, Health Care ,Quality of Health Care ,media_common ,Health economics ,Consumer Health Information ,business.industry ,030503 health policy & services ,Public health ,Public relations ,Data science ,Female ,Outcomes research ,0305 other medical science ,business - Abstract
Upon reading the paper published in this issue of The Patient: Patient-Centered Outcomes Research [1] on public reports for vulnerable populations living with diabetes mellitus, I reacted with surprise to the observation that ‘‘patients have not been systematically engaged in the development, design, and dissemination of publicly available reports on healthcare quality and health information.’’ In reality, the disenfranchisement goes far beyond the vulnerable or marginalized populations, although the repercussions are heightened with vulnerable groups. Paradoxically, there is growing evidence and agreement that patients who are engaged and participate in managing their own healthcare achieve better outcomes [2]. Moreover, patients everywhere are increasingly expected to take an active role in making informed decisions about their healthcare and to take shared responsibility for managing their health condition, especially chronic conditions such as diabetes, arthritis, and cardiovascular conditions. However, we have less confidence and scant evidence that ‘‘a broad spectrum’’ of patients is actually informed, engaged, and empowered to participate as partners. ‘‘Despite this encouraging evidence, self-management is the least implemented and most challenging area of chronic disease management’’ [3]. Why is there such a gap between the seemingly consensual common sense of the value of patient engagement and patient participation in the real world? According to some critics, ‘‘if patients are not engaged, it’s because we as the healthcare system have not been effective in engaging them’’ [4]. More importantly, to make good choices, it is essential that patients have access to quality information not only about ‘‘best practices’’ on how to manage their condition but also practical information about the options available to them and how to find the resources and support needed. So, while governments are increasingly mandating healthcare providers to monitor, measure, and make publicly available indicators of healthcare quality, performance, and outcomes [5, 6], there is a paucity of research as to (a) how (if) patients are using this information and (b) whether it is even relevant to them. Indeed, the research emerging is that ‘‘quality indicators’’ collected by hospitals and other healthcare systems are not useful in guiding patients to the right healthcare provider, the right treatment options, and the right facility [7, 8]. What are the barriers to patients having access to the information and resources that would foster patient engagement? And what are health systems doing about it? One solution is to make information more accessible to patients. The Leapfrog Group, for example, is challenging the status quo whereby ‘‘detailed information about products such as TV’s, cars, and computers is far easier to find than information about hospitals or your doctor’’ [9]. However, it is not clear that the ‘‘self-reported’’ survey data (including items such as computerized ordering of medicines or length of stay) provide most patients with the information to make an informed decision. Nor do websites posting patient ratings of doctors appear to have much influence [10]. Another option is to invite patients to serve on hospital and other health system advisory boards. The Health Care Advisory Board offers strategies, solutions, and a toolkit & Durhane Wong-Rieger durhane@sympatico.ca
- Published
- 2016
34. Author’s Reply to Braillon: 'Moving from Patient Advocacy to Partnership: A Long and Bumpy Road'
- Author
-
Durhane Wong-Rieger
- Subjects
medicine.medical_specialty ,Health economics ,business.industry ,030503 health policy & services ,Public health ,MEDLINE ,Public administration ,Public relations ,Patient advocacy ,Health administration ,03 medical and health sciences ,0302 clinical medicine ,General partnership ,Political science ,medicine ,030212 general & internal medicine ,0305 other medical science ,business ,Quality of Life Research - Published
- 2017
35. A call for action to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region
- Author
-
Diana MacDonell, Xiao Zhang, Anand Jha, Gilberto Lopes, Dong-Churl Suh, Lucy Hickinbotham, Ekaphop Sirachainan, Jasmine Roah Fang Pwu, Hwee Lin Wee, Salmah Bahri, Durhane Wong-Rieger, Ruby Shih, Bor-Sheng Ko, Janet Wale, Swee Sung Soon, and Hwee Yong Lim
- Subjects
Economic growth ,Asia ,Pharmacology toxicology ,Treatment outcome ,Access to care ,Asia pacific region ,Pacific ocean ,Health Services Accessibility ,Rare Diseases ,Political science ,Humans ,Genetics(clinical) ,Pharmacology (medical) ,Challenges ,Letter to the Editor ,Genetics (clinical) ,Health policy ,Medicine(all) ,Pacific Ocean ,business.industry ,Health Policy ,Environmental resource management ,Legislature ,General Medicine ,Treatment Outcome ,Policy ,Action (philosophy) ,business ,Asia-Pacific region ,Rare disease - Abstract
This article is a call for action to the relevant stakeholders to improve access to care and treatment for patients with rare diseases in the Asia-Pacific region by looking into three main areas: (a) developing legislative definitions to confer enforceable protection, (b) creating or strengthening policies by objectively measuring the impact brought about by rare diseases and establishing platforms to reach out to the rare disease community, and (c) fostering collaboration across sectors and countries. It is hoped that these suggested actions can catalyze discussions and progress in the region.
- Published
- 2014
36. Generating health technology assessment evidence for rare diseases
- Author
-
Karen Facey, Gordon H. Guyatt, Gert Jan van der Wilt, Alicia Granados, Durhane Wong-Rieger, Nilay Shah, and Alastair Kent
- Subjects
Research design ,medicine.medical_specialty ,education.field_of_study ,Pathology ,Blinding ,Randomization ,Technology Assessment, Biomedical ,business.industry ,Health Policy ,Clinical study design ,Population ,Stress-related disorders Donders Center for Medical Neuroscience [Radboudumc 13] ,Health technology ,Rare Diseases ,Research Design ,medicine ,Humans ,Intensive care medicine ,business ,education ,Qualitative research ,Rare disease ,Randomized Controlled Trials as Topic - Abstract
Objectives: Rare diseases are often heterogeneous in their progression and response to treatment, with only a small population for study. This provides challenges for evidence generation to support HTA, so novel research methods are required.Methods: Discussion with an expert panel was augmented with references and case studies to explore robust approaches for HTA evidence generation for rare disease treatments.Results: Traditional RCTs can be modified using sequential, three-stage or adaptive designs to gain more power from a small patient population or to focus trial design. However, such designs need to maintain important design aspects such as randomization and blinding and be analyzed to take account of the multiple analyses performed. N-of-1 trials use within-patient randomization to test repeat periods of treatment and control until a response is clear. Such trials could be particularly valuable for rare diseases and when prospectively planned across several patients and analyzed using Bayesian techniques, a population effect can be estimated that might be of value to HTA. When the optimal outcome is unclear in a rare disease, disease specific patient reported outcomes can elucidate impacts on patients’ functioning and wellbeing. Likewise, qualitative research can be used to elicit patients’ perspectives, with just a small number of patients.Conclusions: International consensus is needed on ways to improve evidence collection and assessment of technologies for rare diseases, which recognize the value of novel study designs and analyses in a setting where the outcomes and effects of importance are yet to be agreed.
- Published
- 2014
37. Health Policies for Orphan Diseases: International Comparison of Regulatory, Reimbursement and Health Services Policies
- Author
-
Durhane Wong-Rieger and Francis P. Rieger
- Subjects
medicine.medical_specialty ,Enzyme replacement therapy ,medicine.disease ,Fabry disease ,Approved drug ,Clinical trial ,Orphan drug ,Environmental health ,medicine ,Cognitive skill ,Business ,Intensive care medicine ,Reimbursement ,Rare disease - Abstract
Access to drugs for rare diseases varies considerably, not only in terms of which drugs are reimbursed but also which patients get access. Five-year-old Luc has been diagnosed with MPS II (Hunter’s Syndrome), a genetic disorder with progressive debilitating symptoms affecting the joints and major organs and, in some children, cognitive functioning. The good news is that there is an approved drug treatment that is effective in “slowing the progression of symptoms”; however, the pivotal clinical trials were only conducted with children over the age of five who had no cognitive impairment. While disease severity is hard to diagnose at an early age, his physician believes Luc has some cognitive impairment. Luc’s ability to get access to treatment depends on where he lives.
- Published
- 2013
38. Personalizing health care: feasibility and future implications
- Author
-
Lars L. Gustafsson, Alexander E. Finlayson, Marion Bennie, Kristina Garuoliene, Vera Vlahović-Palčevski, Magdalena Władysiuk, Christina Kvalheim, Laura McCullagh, Durhane Wong-Rieger, Catherine Sermet, Gisbert Selke, Elina Asola, Ulrich Schwabe, Stephen Campbell, Anna Bucsics, Raghib Ali, Christoph Baumgärtel, Saira Jan, Janelle M. Jones, Iñaki Gutiérrez-Ibarluzea, Corrine Zara, D Tomek, Luka Voncina, Eva Zebedin-Brandl, Steven Simoens, Katharine Harris, Miguel Gomes, Harald Herholz, Rickard E. Malmström, Sven-Ake Loov, Parneet K Cheema, Alessandra Ferrario, Fredrik Nilsson, Eduardo Diogene, Krystyna Hviding, Brian Godman, Kamila Malinowska, Iain Bishop, Ken Paterson, Jurij Fürst, Andrew Martin, Menno van Woerkom, Marija Kalaba, Alan Haycox, and Ott Laius
- Subjects
RM ,Genotyping ,Quality management ,Drug development ,Review ,Pharmacology ,BIOMEDICINA I ZDRAVSTVO. Kliničke medicinske znanosti. Klinička farmakologija s toksikologijom ,Biomarkers ,Genomics ,Healthcare policy ,Pharmacogenetics precision medicine ,Personalized medicine ,Health authorities ,Rational use of medicines ,Reimbursement ,Targeted treatments ,RS ,Patient satisfaction ,610 Medical sciences Medicine ,BIOMEDICINA I ZDRAVSTVO. Javno zdravstvo i zdravstvena zaštita ,Health care ,Medicine ,Humans ,Precision Medicine ,health care economics and organizations ,Medicine(all) ,business.industry ,Stakeholder ,BIOMEDICINE AND HEALTHCARE. Public Health and Health Care ,General Medicine ,Precision medicine ,BIOMEDICINE AND HEALTHCARE. Clinical Medical Sciences. Clinical Pharmacology and Toxicology ,Risk analysis (engineering) ,Pharmacogenetics ,Pharmacogenomics ,RA Public aspects of medicine ,Feasibility Studies ,Patient Care ,business ,Delivery of Health Care ,Forecasting - Abstract
Considerable variety in how patients respond to treatments, driven by differences in their geno- and/ or phenotypes, calls for a more tailored approach. This is already happening, and will accelerate with developments in personalized medicine. However, its promise has not always translated into improvements in patient care due to the complexities involved. There are also concerns that advice for tests has been reversed, current tests can be costly, there is fragmentation of funding of care, and companies may seek high prices for new targeted drugs. There is a need to integrate current knowledge from a payer’s perspective to provide future guidance. Multiple findings including general considerations ; influence of pharmacogenomics on response and toxicity of drug therapies ; value of biomarker tests ; limitations and costs of tests ; and potentially high acquisition costs of new targeted therapies help to give guidance on potential ways forward for all stakeholder groups. Overall, personalized medicine has the potential to revolutionize care. However, current challenges and concerns need to be addressed to enhance its uptake and funding to benefit patients
- Published
- 2013
39. Introducing the Tran Qol: A New Disease-Specific Quality of Life Measure for Children and Adults with Thalassemia Major
- Author
-
Nancy L. Young, Victor S. Blanchette, Robert J. Klaassen, Rena Buckstein, Katherine Moreau, Shabbir M.H. Alibhai, Melanie Allen, Ian Quirt, Melissa Forgie, Karen W.L. Yee, Isaac Odame, Durhane Wong Rieger, and Manuela Merelles Pulcini
- Subjects
medicine.medical_specialty ,Pediatrics ,Interview ,business.industry ,Thalassemia ,Debriefing ,Alternative medicine ,Cognition ,medicine.disease ,Omics ,Quality of life ,Family medicine ,Health care ,Medicine ,business - Abstract
Background: Patients with thalassemia major require red cell transfusions for survival and have to deal with iron overload and chelation. Chelation is burdensome, traditionally involving nightly prolonged subcutaneous infusion therapy. We developed a disease-specific tool for these patients (TranQol) to measure their unique quality of life issues. Methods: Pediatric and adult thalassemia health care professionals and quality of life methodology experts generated 69 potential items. 74 further questions were generated through interviews with patients (pediatric and adult) and parents. Results: 120 participants contributed: 16 healthcare workers, 31 children and 30 adults with thalassemia and 43 parents. Duplicate and infrequent questions were discarded leaving 58 items. Three self-reported questionnaires (child, parent and adult) and one child proxy-report for parents were developed. Questionnaire length ranged from 29 (child’s) to 39 (parent’s). Questions were grouped into four domains: physical health, emotional health, family functioning, and school and career functioning. A fifth category on sexual activity included only one item. Cognitive debriefing was done by interviewing additional children, parents, and adults. As a result, three items were added, one was deleted and 16 were modified. Conclusion: The TranQol is a new disease-specific quality of life measure for thalassemia major patients developed using rigorous methodology.
- Published
- 2013
40. Health coaching in diabetes: empowering patients to self-manage
- Author
-
Durhane Wong-Rieger and Francis P. Rieger
- Subjects
medicine.medical_specialty ,Health coaching ,business.industry ,Endocrinology, Diabetes and Metabolism ,education ,Core competency ,Psychological intervention ,Directive Counseling ,Cognition ,Professional support ,General Medicine ,medicine.disease ,Self Care ,Delivery methods ,Endocrinology ,Nursing ,Diabetes mellitus ,Internal Medicine ,Physical therapy ,Diabetes Mellitus ,Medicine ,Humans ,Patient Compliance ,business ,Life Style - Abstract
To effectively manage diabetes mellitus, patients must adhere to treatment recommendations and healthy lifestyle behaviors, but research shows many patients do not do this. Education is effective when combined with self-management support but peer-support programs do not lead to lasting changes. Health coaching, or professional support, can be highly effective if it focuses on developing self-efficacy and skills such as goal-setting, problem-solving and managing cognitive and emotional barriers. This overview discusses the benefits of patient self-management for chronic conditions such as diabetes, core competencies for health coaching, theoretical bases and principles of health coaching interventions, delivery methods and the evidence that health coaching works for diabetes self-management.
- Published
- 2012
41. Should Canada allow direct-to-consumer advertising of prescription drugs?: no
- Author
-
Durhane, Wong-Rieger
- Subjects
Marketing ,Canada ,Drug Industry ,Drug-Related Side Effects and Adverse Reactions ,Advertising ,Conflict of Interest ,Humans ,Drug Prescriptions ,Risk Assessment ,Drug Costs ,Debates - Published
- 2009
42. Can a health professional represent patient view: Patient organization response
- Author
-
Durhane Wong-Rieger
- Subjects
Health personnel ,Health professionals ,Nursing ,business.industry ,Health Policy ,Medicine ,business ,Patient organization ,Patient preference - Published
- 2011
43. State of the art of rare disease activities around the world: overview of the non-European landscape
- Author
-
Durhane Wong-Rieger
- Subjects
Government ,medicine.medical_specialty ,business.industry ,lcsh:R ,lcsh:Medicine ,Legislation ,Subsidy ,General Medicine ,Disease ,Orphan drug ,Family medicine ,Health care ,Epidemiology ,Meeting Abstract ,medicine ,Pharmacology (medical) ,Business ,Genetics (clinical) ,Rare disease - Abstract
With support from patient associations, political frameworks for rare diseases have been established throughout the world albeit with varying definitions for rare diseases. In the USA, the National Organization for Rare Disorders was instrumental in passing the 1983 Orphan Drug Act and the 2002 Rare Disease Act, which includes medical devices and dietary products as orphan products. In 2011, the House passed bills supporting research for undiagnosed diseases and preserving regulatory fee exceptions for orphan drugs. In 2012, the Canadian government awarded five-year rare disease research grants. With advocacy from the Canadian Organization for Rare Disorders, Health Canada concluded consultations on an orphan drug regulatory framework. Several provinces have implemented orphan drug access programs and expanded newborn screening. In Argentina, the Geiser Foundation led advocacy resulting in the 2011 Rare Disease Law, obliging health and social systems to provide assistance. A central committee, including patients, will coordinate activities like neonatal screening and patient registries. In 2010, Colombia passed the Orphan Disease Law and hosted the 2nd National Forum of Orphan Diseases. In 2011, Peru passed legislation promoting treatment and a national strategy including diagnosis, surveillance, prevention, care, and rehabilitation. Through the 1972 Medical Care Program for Specific Diseases, Japan provides medical cost subsidy to patients affected by “56 rare and intractable diseases.” The 1993 Orphan Drug Law supports research and development. In 2008, Supporting Organizations for Patients with Rare Diseases was formed. Since 1991, Singapore’s Orphan Drugs Policy allows patients with life-threatening and severely debilitating diseases with no other treatment options to access approved drugs prescribed by their practitioner. The Taiwan Foundation for Rare Disorders helped secure the Rare Disease and Orphan Drugs Act in 2000. Diseases affecting fewer than 1 in 10,000 that are officially recognized are eligible for medical coverage. In Korea, the Orphan Drug Centre supplies medicines for diseases affecting fewer than 1 in 20,000. The Genetics and Rare Disease Centre supports national reference centres and research. In China, in 2011, medical professionals called for legislation to support healthcare, research, orphan drug development, and epidemiological studies for diseases affecting fewer than 1 in 10,000. Australia’s 1987 Orphan Drugs Policy makes available rare disease drugs, based on US regulatory information. In 2010, consultation for a national strategy was posted online. In 2012, Rare Voices Australia was formed.
- Published
- 2012
44. International Management Research
- Author
-
Durhane Wong-Rieger and Fritz Rieger
- Subjects
business.industry ,Political science ,Public relations ,business ,International management - Published
- 1993
45. 4. Global Firms and Nation-States
- Author
-
Durhane Wong-Rieger, Fritz Rieger, and Stephen J. Kobrin
- Published
- 1993
46. 2. International Management Research: Past, Present, and Future
- Author
-
Durhane Wong-Rieger, Fritz Rieger, and David Ricks
- Subjects
business.industry ,Political science ,Public relations ,business ,International management - Published
- 1993
47. 11. Research for International Management - Practitioners' Perspectives
- Author
-
W. A. Pursell, R. J. Radway, Fritz Rieger, and Durhane Wong-Rieger
- Subjects
medicine.medical_specialty ,Family medicine ,Political science ,medicine ,Engineering ethics ,International management - Published
- 1993
48. 5. Research in International Human Resource Management
- Author
-
Betty Jane Punnett, Fritz Rieger, Rosalie Tung, and Durhane Wong-Rieger
- Subjects
Knowledge management ,business.industry ,Data management ,Human resource management ,Environmental resource management ,Resource management ,Business ,Natural resource management ,Organizational behavior and human resources ,Strategic human resource planning - Published
- 1993
49. 8. Globalization: Separating the Fad from the Fact - Comments on the International Management Research Conference
- Author
-
Fritz Rieger, Henry Mintzberg, and Durhane Wong-Rieger
- Subjects
Globalization ,Political science ,Public administration ,Management ,International management - Published
- 1993
50. 12. Strategies for Achieving Relevance
- Author
-
Durhane Wong-Rieger and Fritz Rieger
- Subjects
Management science ,Relevance (information retrieval) ,Psychology - Published
- 1993
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