Thalassemia Patients Group call for the inclusion of patients in policy making at APPIS 2021, Health News, ET HealthWorld

New Delhi: Thalassemia Patients Advocacy Group (TPAG) stressed the importance of involving patients in the policy-making at the ongoing Asia Pacific Patient Innovation Summit (APPIS), a unique collaborative partnership initiated to address the evolving capability needs of patient organizations across Asia Pacific and beyond.

The 3 days virtual summit “Co-creating patient advocacy of the future”, scheduled between 2nd and 4th March 2021 has been organized to support patient organizations to be better equipped and have their voices amplified in the healthcare system.

The APPIS initiative has been brought together by five patient organizations for the betterment of people dealing with rare cancers, disabilities among others. Targeting patient communities across Asia Pacific, the Summit aims to set out a valuable blueprint for the future of patient engagement, encompassing strategic aspects of patient organization capabilities, such as funding, stakeholder partnership, and clinical trials engagement.

“We should replicate and institutionalize such collaborations for effective policy formulation and implementation in the healthcare sector”, said Anubha Taneja Mukherjee, Member Secretary, Thalassemia Patients Advocacy Group.

“When it comes to policymaking for patients, I strongly feel that decision-makers may not be experts in every subject or issue and it would therefore be pertinent to include a patient representative who understands the trials and tribulations involving the relevant condition. For instance, the decision-makers could invite thalassemia patients to be a part of the policymaking while devising a new policy on thalassemia as patients are the ones who undergo the hardship of a particular disease. Patient Advocacy Group (PAG) are well known for their role and achievements in establishing better health services for patients in several countries of the world. India should replicate this,” She added.

“Policymaking is a consultative process and involves a huge gamut especially in India and there is a possibility that sometimes, certain issues don’t come into the eyes of policymakers as they should as the challenges involving certain disease conditions may not be evident to them. In such a scenario, we do see a significant role of civil society groups and NGOs coming forward and highlight these issues in the healthcare space. There is more role for patient advocacy groups and patients themselves to actually engage on relevant forums to educate the people in the system by sharing the human aspect of the challenges and suffering,” Said Dr. Urvashi Prasad, Senior Public Policy Specialist, NITI Aayog.

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