Summary: 5th AGORA Conference, 30 September – 2 October 2016
Novotel Bucharest City Centre, Bucharest, Romania
The 5th Agora Conference, organized by Agora Platform took place between the 30th of September – 2nd of October 2016 in Bucharest. The conference’s main topic was “Patient’s right to be partner in research and decision-making process” accompanied by two subtopics: a) “Accessibility and availability of research and educational programs for patients with RMD’s” and b) “RMDs and supportive tools and technology for a better life”.
The first day of the conference started with the General Assembly meeting, where all the Agora members met to discuss matters of the association and also vote on some decisions. This session is always a clearly practical and procedural meeting addressed only to the Agora members.
The conference started officially with an introductory session where, the host country’s association, the Romanian League Against Rheumatism (LRR), gave three presentations about the work their association is doing in Romania and their good cooperation with the doctors at the rheumatic center in the Dr. Ion Stoia Hospital. This hospital is an exquisite case of a rheumatic center, where patients can go to have their medical treatment, but also have physiotherapy, kinesiotherapy and other supplementary treatments.
The first session of the conference concentrated on patient’s involvement in research. Dr. Sophie Staniszewska from the University of Warwick discussed about the “The benefits of patients’ involvement in research” given her experience in coordinating and leading research project where patients were involved. During the Q&A session following the keynote presentation, patients asked questions around how accessible research is to them (depending on their country of origin) as well as the role patient organizations (should) play to bring research closer to them.
The first session was followed by two workshops: Workshop A, “EULAR Patient Research Partner educational programme: mutual benefits for all stakeholders” facilitated by Nele Caeyers, Chair Elect of PARE, and Workshop B: “The relationship between patients and research: How can patients get involved?” facilitated by Dr. Sophie Staniszewska.
The second session was dedicated to introducing the EUPATI course to the delegates and making them familiar with the ongoing courses and the important tools created to help patients in every aspect when they search for information. Souzi Makri, Chairperson of Agora and EUPATI Fellow was the key presenter of the session and talked about “EUPATI: an efficient training programme for future patient partners in research and National Platforms”, laying the foundations for the two workshops to follow. Workshop C, “The EUPATI experience: the inside story” was facilitated by two EUPATI Fellows, Souzi Makri and Elsa Mateus, where they shared their experience as EUPATI students and then led a discussion on ways to sustain EUPATI and promote the use of the EUPATI tools (toolbox, library, etc.) by all patients and interested parties. Workshop D, “The EUPATI Toolbox – a practical tool for research training in medicine on national and individual level” was facilitated by current EUPATI student Codruta Zabalan, who presented and demonstrated the EUPATI Toolbox to the workshop group.
The first day of the conference was concluded by the feedback t the plenary session, facilitated by Dr. Frane Grubisic.
The second day of the conference started with the third session, and the two keynote presentations by Dr. Frane Grubisic (Croatia) and Boryana Boteva (BOPRD, Bulgaria) about “Expectations and challenges in implementing the Shared-Decision Making Process: the doctors’ and patient’s perspectives”. The two presenters discussed this very important issue from two different perspectives and both agreed that the paternalistic approach, which is usually used in the discussions between doctor and patient, should be abandoned and that both doctor and patient should work together as equals to ensure the best possible treatment in favor of the patient.
Workshops E and F were dedicated as a brainstorming session in order to set the foundations for the Agora Patients’ Charter. Workshop E was facilitated by Nele Caeyers (PARE Chair Elect) and Elena Tsigki (Agora Secretariat and project Coordinator) and Workshop F was facilitated by Souzi Makri (Agora Chairperson) and Boryana Boteva (BOPRD). The delegates were divided in two groups and discussed the need for creating an Agora Charter for patients’ rights, based on previous research and available material which was sent to them before the conference. The brainstorming generated some very good points as to the clarity of the objectives and purpose this chart should have, as well as the addressed audience (patient for empowerment and media as an aware raising, effort, or policy makers for a social change?).
It was clear from both sessions that patients were most concerned about the right patients have to access to their medical records, as well as the accessibility availability of information on treatments and other medical related subjects in lay language. There was also a discussion about the benefits of integrated healthcare and the use of the European Medical card in equal ways throughout Europe, regardless of the national legislation/regulations of each country.
For yet another year, the Agora members presented some abstracts to show their work and their activities within their own country/region. The abstracts presented were:
- “Green Health – Make the difference: awareness campaign for conscious and waste-less use of drugs”, by APMAR (Italy)
- “Social Activities and quality of life in members of the Greek Association (ELEANA) with Rheumatoid Arthritis”, by ELEANA (Greece)
- “The connection between the patients, the rheumatologists and the researchers”, by ACS France (France)
- “Chatting Rheumatism Through Every Nook and Cranny” and “Industrial Designs for Patients with Rheumatoid Arthritis”, by Romaturka (Turkey)
The fourth and final session started with a keynote presentation entitled “EULAR-PARE supportive tools and programs for patient organisations: How can Agora utilize and share these tools with its member organisations” by Florian Klett, EULAR Project Manager. Florian Klett presented all the tools EULAR has developed and offers to patient organisations (such as the Knowledge Transfer Program) in order to help member patient associations work more effectively in their efforts to make a change. Since Agora became a new co-opted member of the PARE standing committee of EULAR, there are vast ways of cooperation between the two platforms from which the Agora members can greatly benefit.
The keynote presentation was followed by Workshops G and H, which were dedicated on “The use of supportive tools and technologies for RMDs patients”. During Workshop G, “The use of everyday tools for people with rheumatic diseases”, Codruta Zabalan (LRR) and Nicolae Costin (kinesiotherapist) discussed the importance of using everyday tools that will make the life of RMDs patients easier. They also demonstrated a variety of these tools and showed the participants ways in which such tools can be used. Finally, Workshop H on
“Supportive technological tools and RMDs: how to use to use them to your benefit” facilitated by Agora members Serena Mingolla (APMAR) and Claire Cardi (ACS France) presented two case studies from their own organisations. Claire Cardi presented the platform ACS France developed called SPONDY+, which is an online platform where patients with spondyloarthritis can register in order to build a community and share experiences, but also find valid information about their disease as well as a register of available doctors near their area.
The second case study presented by Serena Mingolla, was the Psoriatic Arthritis App, which is a mobile application generated by APMAR in order to provide patients with useful information; send reminders to patients to take their medication on time as well doctor appointments etc.; holds a database of doctors and medical centers. Following the case study presentations, the group was engaged in discussion about the benefits or challenges of using these types of electronic tools.
The second day of the conference concluded with the feedback to the plenary session facilitated by Florian Klett (EULAR Project Manager). Finally, Souzi Makri (Agora’s Chairperson) gave the final remarks and thanked the speakers, workshops facilitators, Agora’s partners from the pharma industry, BMS, AbbVie, ROCHE, MSD and Bayer who made everything possible for Agora. Finally, she thanked all the delegates for participating to the conference.