News Across Asia “Pharmacoeconomics and Outcomes Research Quarterly Serving to Inform Health Policy in Asia-Pacific” ISPOR Asia Consortium Leadership Volume 6 Number 1 (April-July 2017) ISSN 2308-1945 Executive Committee Table of Contents 2016-2018 Chair Health Policy in Asia-Pacific Isao Kamae, MD, DrPH University of Tokyo Patient Involvement in Health Technology Assessment in Asia- Tokyo, Japan Introduction, China, Japan, South Korea and Taiwan Health Technology Assessment and Its Application in Vietnam 2016-2018 Chair-Elect Kun Zhao, PhD, MD, MHSc Regional Health Initiatives China National Health 2nd International PEOR Conference in Andhra Pradesh, India Development Research Center Beijing, China Workshop in Kolkata, India Indonesia workshops and publication 2016-2018 Past Chair Surachat Ngorsuraches, PhD Asia Consortium at ISPOR Boston South Dakota State University Asia Consortium meetings and forums Brookings, ND, USA Advisory Committee Outcomes Research Value in Health Regional Issues (ViHRI) Vol 12, May 2017 – focusing on Asia 2017-2019 Chair Bruce Crawford, MPH, MA ISPOR 6th Latin America Conference inVentiv Health Register at the conference website Tokyo, Japan 2017-2019 Chair-Elect Member-Reported News Chee-Jen Chang, PhD Stent Price Regulations in India Chang Gung University HTA Horizons Expanding within the Eurasian Economic Union Taipei, Taiwan Drug Catalogue Selection in China Establishing Cost-effectiveness Threshold for Malaysia 2017-2019 Past Chair Vivian WY Lee, PharmD New Health Policies in South Korea The Chinese University of Hong Workshop on Bioterrorism in Iran Kong, Hong Kong, Mainland China Member-Reported Accomplishments (Prof. Subhash Mandal and Dr. Amit Dang) Regional Initiatives ׀ ISPOR Asia Consortium ׀ Outcomes Research ׀ Education ׀ Health Technology Assessment ׀ Health Policy in Asia Copyright © 2017, International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Volume 6 Number 1 News Across Asia ISSN 2308-1945 April-July 2017 News Across Asia Co-Editors HEALTH POLICY IN ASIA Patient Involvement in Health Technology Assessment in Asia Dr. Jitendar Sharma, CEO, Andhra Pradesh MedTech Zone, Advisor, Health, Govt. of Andhra Pradesh, and Executive Director, Kalam Institute of Health Technology, New Delhi, India Introduction The feature of involving patients in health care decision making processes is emerging in Asia. The concept of patient evolvement in health care decision makings stems from the notion of “shared decision making” where Nathorn clinicians and patients make decisions together using the best available evidence which achieve the best health Chaiyakunapruk, outcome. Many global HTA agencies have provided institutionalized structure for patient involvement in assess- PhD, PharmD ment of health technologies during the “values” appraisal process (Figure 1) Professor, School of Figure 1: HTA Process and Patient Involvement Pharmacy, Monash University Malaysia Selangor, Malaysia Bhagwan Aggarwal, PhD, MBA TEDMED Scholar for So why is shared decision making thought to lead to better health outcomes? If a communication breakdown TED Talks, USA occurs between clinician and patient during treatment, the patient may be unaware of treatment or management options and outcomes, while the clinician may be unaware of patients’ circumstances and preferences. This would invariably lead to an erroneous or less optimal treatment plan. Thus the optimal decision takes into ac- count evidence-based information about available options, the provider’s knowledge and experience, and the patient’s values and preferences, following the SHARE approach: The Share Approach Step 1: Seek your patient’s participation Soraya Azmi, MD, Step 2: Help your patient explore and compare treatment options MPH, Managing Step 3: Assess your patient’s values and preferences Step 4: Reach a decision with your patient Director, Azmi Step 5: Evaluate your patient’s decision Burhani Consulting and Veras Research There are limitations towards integrating full shared decision-making in many Asian countries, due to several Petaling Jaya, factors, including information asymmetry, lower education profile of patients, patient participation may open/seek Malaysia options beyond fiscal space of providers, the care continuum pathway is not always assured, a lower risk taking ability of patients for decisions would keep their participation away, general regional development and infrastruc- ture limitations such as internet access. Ultimately, patients can and do have a significant role in health care deci- Managing Editor sion making. They can contribute data for research, take part in framing the decisions to be made, embed the Robert Selby patient perspective in scientific judgements and analysis, contribute values, be involved in the recommendation process, act as advocates and be involved in decisions, and have a role in governance. Editorial Staff Nancy Chen Nancy Sun China Nadia Maldonado Shanlian Hu, MD, MSc, Professor, School of Public Health, Fudan University, Shanghai Health Development Research Center, Shanghai, China Patient involvement in China through the participation in patient and disease advocacy groups is quite dynamic, and according to the unofficial data source, more than 70 different kinds of disease patient groups have been established in China. Some are registered by the Ministry of Civil Affairs at the national level; some are organized Copyright © 2017, International Society for Pharmacoeconomics and Outcomes Research (ISPOR) 2 Volume 6 Number 1 News Across Asia ISSN 2308-1945 April-July 2017 by hospitals at the local levels. The patient groups or associations are self-organized by patients and their family members. These patient groups have memberships on a voluntary basis, are non-profit and are mutually supporting. The patient association plays a role as a communication platform to help patients in several ways including conducting health education, exchanging their treatment experience, providing psychological comfort to patients, calling on government to focus on their diseases, improving the reimbursement and payment from third-party payer and PAP programs, and serving as a watchdog on key issues such as shortages of drugs. One example of a major patient association in China Figure 2: Hemophilia Home of China Major Milestones is the Hemophilia Home of China. Major challenges facing patients with Hemophilia in China include lifelong high costs of treatments, insufficient reimbursement of the costs, shortages of medicine sup- plies, discriminating education policies, and lack of understanding or acceptance by family members or society of those with the affliction. The Association has made a large impact on health insurance policy in recent years through its advocacy, including the following milestones (Figure 2): And apart from these policy impacts, the Association has continued to have a real impact on patients in other ways. Continually growing, there are now 4,665 hemophilia cases and family members have registered at Hemophilia Home of China. The Hemophilia Home has provided direct assistance nationwide (including medical aid, poverty relief, drug donations) for poverty stricken and severe hemophilia cases in 21 provinces and has helped 249 hemophilia cases. In recognition for these achievements, in 2014 China Hemo- philia Home won the World Federation of Hemophilia Outstanding Contribution Award. Patient associations thus play an incredibly im- portant role in health care decision making in China by representing and advocating for the rights of the patient. Japan Isao Kamae, MD, DrPH, Project Professor of HTA and Public Policy, GraSPP, The University of Tokyo, Tokyo, Japan Patient involvement in health care decision making has to still be adopted in Japan, and decisions are taken primarily by special government committees such as the Special Committee of Cost-Effectiveness (Chui-I-Kyo). While the Chui-I-Kyo is comprised of different stakeholders and experts such as manufacturers, clinicians and academics, patients are notably missing. However, ways that the public may be engaged in decision making in the future include commenting/voting on the draft on assessment and appealing coverage and pricing decisions vis a vis a new “Appraisal Committee.” Patients certainly can provide useful information for decision makers, including: Insights on preferences for health states (for incorporation into societal/ethical factors in appraisal on CE) which could be reflected as QALY estimates Information about costs borne by the family (i.e. out-of-pocket expenses, time costs, informal care, etc.) which are not included in the CEA guideline Views on the experience of care (convenience such as oral vs. IV infusion, different dosing schedules, etc.) And how should patient involvement be incorporated into decision making in Japan? There are several opportunities for engagement. In the context of new HTA activities in Japan, patient organizations are currently not included as stakeholders although it was initially suggested that the appraisal committee have a patient representative. This might be an opportunity for further representation. Addition- ally, even if patient values are used for health states in QALY estimation, these cannot be reviewed by patients’ themselves for validation currently. That said, some challenges towards implementing patient perspectives include labor and time spent in gathering patient comments, practical difficulty to define selection criteria for 'unbiased'

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