AB1484-PARE Forming progressive patient alliances for progressive thinking
Authors: E Kritza, E. Tsigki, V. Romero Pazos, B. Boteva, S. Micallef
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> The role and scope of influence of patient organisations has been undeniably increasing. Wilson 1999 Patients are in the lead of influencing the decision-making processes in healthcare and in doing so, forming strategic and constructive alliances through umbrella organisations can be of great value. This article discusses the benefits of forming progressive alliances between RMDs patient organisations using the example of the partnership between Agora and the Global Alliance for Patient Access (GAfPA). The data presented has been drawn from the first joint project between Agora and GAfPA (2017) in an effort to raise awareness about access to Biosimilar and Biologic medicine, in combination with developing self-management skills in the sense of a holistic model for treating and managing RMDs. <h3>Objectives</h3> The objectives of the joint project were to provide patient groups with a greater understanding of the current policy landscape for Biologic and Biosimilar medicines in Europe; equip patients with effective tools to inform policymakers about patient concerns; kick-start the establishment of an advocacy platform for the Agora organisations; and to examine the role of self-management programmes in supporting patients with RMDs along with the use of technology (HTA). The main objective of this article is to examine the role of strategic alliances in creating a strong patient front that seeks to become part of the decision-making processes and influence policy changes on national and EU levels. Auch alliances offer patients a new perspective and a progressive way of thinking healthcare matters. <h3>Methods</h3> Keynote presentations and group discussions were carried out. The patients who participated in the workshop were exposed to the fundamental information about the use of Biologic and Biosimilar medication and related policy issues and were engaged in a discussion that eventually led to the composition of a position paper with concrete principles on the use of this treatment. <h3>Results</h3> Agora and GAfPA have published the "Patients Principles around the use of Biologics and Biosimilars", which was disseminated amongst the Agora members and has been used to raise awareness about the specific topic in each country-member. <h3>Conclusions</h3> The alliance between Agora and GAfPA has enabled Agora to strengthen its advocacy efforts and focus towards becoming more active in monitoring policy changes. There was a strong consensus that the patient voice should be central to all discussions about commencing or switching treatments and that shared decision making should always be an integral part of the process. The collaboration between national and umbrella organisations has created a strong network of patients, who share similar ideas, principles and support each other towards advocating for patients' rights to a higher quality of life. These principles would certainly be of interest to EULAR PARE members and other patient organisations beyond the immediate AGORA/GAfPA network, who could consider using them in their own advocacy work and/or when supporting individual patients in their organisations. <h3>References</h3> [1] Wilson, J. (1999). Acknowledging the expertise of patients and their organisations. BMJ: British Medical Journal, 319(7212), 771. [2] Agora-GAfPA (2017). <i>Biologics &amp; Biosimilars Self-Management Workshop</i>. [Report]. <h3>Disclosure of Interest</h3> None declared