Patient associations have an important place in the health eco-system, in Turkey and throughout the world as important structures providing solidarity networks for the patients, amplifying their voices, their needs and expectations to wider audiences. They are the paramount supporters of patients and their relatives in diverse areas from disease education efforts to support lines, from psychological support to access to treatment. Patient associations are the cardinal points of contact in communicating the expectations and unmet needs of patients and their families to other stakeholders.
Patient associations around the world permit patients to take more active roles in the processes of new drug development, clinical trials development programs, and reimbursement approval processes. With our vision that prioritizes the inclusion of a patient-centered perspective in decision-making mechanisms, we aim for patients and patient associations to reach an effective level of advocacy on issues related to them, without the need for support from third parties. We firmly believe that in order to establish a more robust and patient-oriented healthcare system, patient associations operating in all disease areas should reach an effective level of advocacy in line with the rights and interests of their members through Capacity Building Programs where they can improve their competencies and institutional infrastructure.
In the light of all these requirements, the AIFD Patient and Patient Associations Initiative Core Committee prioritized two main issues in 2020. First, to implement a Capacity Building Program to meet the capacity development and institutional infrastructure improvement needs of patient associations, second; to prepare a guiding document for the interaction processes of AIFD member companies and personnel who interact with patient associations.
In this regard, the ''AIFD Patient Associations Development Academy'', which was brought to life with the vision of improving the institutional infrastructures of NGOs (Non-Governmental Organizations) that provide services for patients and their relatives, especially developing their effective governance and advocacy competencies, was held on 30 June 2020 by SIM (Social Innovation Center). Within the scope of this program, it is aimed to provide training and consultancy services to nine patient associations on resource development, financial management, corporate communication and strategic planning for a period of 2 years and to strengthen the corporate business processes of these 9 associations.
As a second priority issue for 2020, the “AIFD Note for Guidance for Interactions with Patients and Patient Associations” document was developed and shared with all AIFD member companies on November 6, 2020 after the approval of the AIFD Board of Directors; the guidance document aims to assist member companies, in their work with patient associations, with questions and answers under the main headings of meeting organization, consultancy services, value transfer, creating joint content and preparing awareness materials for patients.
After the completion of two studies prioritized by the Core Committee for 2020, a workshop was held on 3-4 November 2020 with the participation of committee members and invited professionals in order to determine the roadmap for 2021. Project concepts developed in the workshop along the discussion points of "How can patient associations contribute to public decision-making relations?" and "How to increase and improve the digital effectiveness / competence of patient associations?" were incorporated to the core group 2021 roadmap.
In 2021, the Committee, in line within the vision set by the AIFD Board of Directors, will continue its efforts to incorporate patients as a dynamic stakeholder of the healthcare system.
