Official Report of 2012 AGORA Conference in Belgrade
Self management of Rheumatic and Musculoskeletal diseases – The new focus of AGORA
Self management of RMDs was the theme selected by the 2012 AGORA conference which this year was hosted in the beautiful city of Belgrade.
Self management is a person centred approach in which the individual is empowered and has ownership over the management of their life and conditions trying to make it as good as possible.
The event pursued two main objectives:
- To inform, stimulate and educate Agora members about successful self management methods.
- To identify the barriers in promoting and implementing self management methods for RMDs in Southern European countries
This year the conference working group decided that in taking on such a major topic this should be the subject of all the sessions. An impressive line-up of expert speakers provided presentations, each focusing on Self management from a different perspective, which all informed and stimulated debate.
Claire Kinneavy who is an Arthritis Ireland Volunteer and a Master Trainer Chronic Disease Self Management presented an introduction to self management programme and described the evolution of self management programme in Ireland Arthritis. She focused mainly on the Stanford Self management programme which has been very successful and it is already implementing in several countries.
Katerina Koutsogianni the president of the Cretan organization against Rheumatic disease described how they developed their own programme according to their needs and resources they were able to provide. Spyroula David a psychologist from Cyprus and Linda Van Nieuwkoop from the youth group in Netherlands gave tips on how to overcome the barriers in implementing a self management programme.
The focus on the second half of the programme was:
- To explore the value of a good patient-doctor communication and the barriers to an effective dialogue
- To identify ways for overcoming the barriers and improving the patient-doctor communication and how these can be implemented on national level by patient organizations and individuals
Dr. Viorica Pavlovu a young doctor from Romania and professor Nemanja Damjanov president of the medical Serbian society and general secretary of EULAR gave their medical perspective of self management and the results of the Partners in Treatment project were presented by the delegates of the two pilot countries (Romania-Spain) where the project is being implemented at the moment.
The speakers also facilitated workshops where delegates were able to share best practices and develop new ideas that could be used on a national level. There were 37 delegates from almost all AGORA member countries, doctors, pcychologist and from delegates from industry giving different perspectives of the topic. Our thanks to all those who attended and contributed to the outstanding success of this year’s conference and to our partners from BMS, Roche, Merck and Abbott for their generous support.
You will find more detailed information about the presentation and other conference activities on this report. Presentations from the conference are available from the secretariat.
Ms Claire Kinneavy in her presentation defined Active Self- as the tasks that individuals undertake to live well with one or more chronic conditions. These tasks include having the confidence to deal with: medical management , role management and emotional management of their conditions.
Another more passive approach of Self management is a person centred approach in which the individual is empowered and has ownership over the management of their life and conditions. In both ways the benefit is that the person improves its self confidence and learning and emphasizes on what he/she can do to become an active self manager and how to make the most of the information from health professionals. It was also presented the most popular and evidence based licensed self management programme in the world that started in 1979 in Stanford University California. The programme was initiated by Dr. Kate Lorig, who is an American registered nurse and professor at the Stanford University School of Medicine. She is also the director of the Stanford Patient Education Research Center. She is known for her work on chronic disease and patient education, has published several books and peer-reviewed journal articles in those fields, and developed a peer-led self-management course for patients with chronic diseases. The courses are delivered by people who have arthritis and work with people with arthritis. Therefore, they understand the difficulties faced. Leaders are trained by ‘Master Trainers in Chronic Disease and the self management workshops are interactive, focusing on building skills, sharing experiences and support.
Ms Katerina Koutsogianni the chair from the arthritis foundation in Crete shared the experience of developing a self management programme in a small regional organization and stimulated other small organizations with limited human and resources to follow this example. The program was adopted from the Cyprus League Against Rheumatism and was adjusted to the needs and capabilities of our members. The objectives of the programme is to provide the people with RMDs with simple and understandable information about the mechanisms of the disease, the prognosis, its impact on their health, their choices in relation to the therapies, possible side effects etc., the psychological support for both patients and their families, to enable patients to evaluate their situation and work in cooperation with health professionals and to participate equally and actively in the development of their treatment program, to help the patients acquire all necessary tools so that they can deal effectively with the negative consequences of their diseases and live a life of quality, dignity and therefore be able to participate fully in society. The programme is led by the people with RMDs but the sessions and workshops are facilitated by different professionals depending on the diseases and the needs of the participants. Duration of each course is 1 month / 2 hours per a week and the groups are consisted of 8-10 participants. No fees and additional expenses are required apart from the materials used in the workshops which are paid by the organization.
The assessment was very positive and almost everyone commented that more extra session time was needed and in the end they were willing to attend other courses planned in the future. The professionals admitted that in fact they, themselves were the trainees and not the trainers. The experience was unexpectedly positive.
Overcoming barriers in implementing self management programme
Spyroula David a psychologist who is actively involved in the self management courses run by the Cyprus league described in her presentation the main psychological barriers that might prevent an individual from participating in a such programme.
When confronted with the disease, people experience feelings of helplessness, anxiety anger and uncertainty for the future and the self pity or the denial are the most serious obstacles in managing their disease successfully.
By the end of the self-management workshop the participants, find their own constructive way to respond to the disease, have control over their thoughts and feelings, as well as they acquire the knowledge to handle difficult situations, instances of relapse
Participants engage a positive way of thinking, deal with stress, develop self-awareness, control their emotions and actions, thus the disease is kept at its lowest levels.
Most people enjoy the impact of the benefits that derived from the self-management workshop, under the realization that all the changes conducted in their life, depend on their attitude towards life.
The preliminary results of the Partners in Treatment project
In the beginning of 2012 a new ambitious project was initiated by the AGORA Board with the aim to identify and prioritize the problems in treating RMDs in Southern European countries related to early referral, rapid start of treatment and early diagnosis, to assist AGORA in realising a pilot-project in two AGORA countries that will promote the empowerment of people with early stage Rheumatoid Arthritis in communicating with medical professionals and to develop a guide for implementation of an educational programme that enables all AGORA member organizations to transfer the programme to their own country after the end of the project.
Spain and Romanian league were chosen as the two pilot countries to implement the new project and presented in Belgrade their experience and their expectations of the project.
Codruta Zabalan the representative of Romanian league and also member of the AGORA board presented the expectations of her organization from participating to the project which are:
- Offering high quality, professional information, tools, materials and courses to the members of our league in our continuing process of helping/assisting their members in coping with the disease;
- Enable and enhance patients’ communication with rheumatologists, health professionals, therapists, advisers etc. by providing a high quality tool like the guide of communication, leaflets and cards to follow when having an appointment;
- Starting a dialogue, facilitate and then enhance patients’ communication with the actors in the labor market and work-mates;
- Facilitating and enhancing patients’ communication with family members and friends for a more intensive involvement in the society;
- Helping people with RMDs to gain self-confidence;
- A high quality technique for teaching and assisting people with RMDs in gaining self-management and self-efficacy skills (learning how to better cope with the disease and how to apply mental-stress management) etc.
Yolanda Marron the representative of Conartritis the Spanish organization against Rheumatic diseases said that their own expectations from the project are on the longer term to educate their associations members and Spanish health professionals in order to:
- Shorten the delay of referral, diagnosis and start of treatment
- Achieve better management of rheumatic and musculoskeletal diseases
- Improve quality of life for the patients by enabling them to be active and live independently a normal life and by decreasing the financial burden for them and for the society
The project is expected to be completed within 2013 and the final result to be presented in the next AGORA conference.
The medical perspective
Prof. Nemanja the president of the Serbian society of rheumatologists and general secretary of the European League against Rheumatism (EULAR) pointed out in a very comprehensive presentation the importance of a good communication between patients and care providers. ‘’We are all aiming at improving the lives of people who live with a rheumatic disease. Patients are the experts and doctors should learn to listen carefully. Good communication begins with speaking in a way which can be understood.’’
Dr Viorica Pavlovu a young rheumatologist from Romania gave her own perspective about the facilitators and barriers in implementations of the self-management programmes in rheumatology practice and primary care. Her suggestion is to establish an integrated system-wide approach to self management support and enable also primary health care providers to deliver self-management as a routine part of care according to patients needs. She also highlighted the need both health care providers and patients to be educated and obtain the necessary skill in order to ensure the success of the self management programmes.
On Saturday night all conference participants enjoyed traditional dinner in the modern Serbian restaurant of Kakalamba having the opportunity to relax and talk with each other in a less formal atmosphere.
On Friday Maarten De Wit 2012 AGORA conference task force member and VP of EULAR PARE standing committee for many year, introduced the EUMUSCNET the european project which is supported by EULAR and EU and is aiming at identifying the differences and insufficiencies in health care among European countries, raise and harmonise quality and equity of care of musculoskeletal conditions across the EU, develop and operationalise a relevant health surveillance and information system for professionals, patients and policymakers.
At least 22 institutions in 17 countries are participating to the project and they can use the data from EUMUSC.net to strengthen their campaigns to improve health care for patients with OA and RA in Europe.
The conference closed with a press conference where Professor Nemanja the president of the Serbian rheumatology society, Dr. Mirjana Lapcevic President of the Association of Rheumatic Diseases Patients of the Republic of Serbia (ORS), ……from the ministry of health and Ms Jelena Kotevic the manager of the normative affairs in the sectorfor the protection of persons with disabilities in the Ministry of Labour, Employment and Social Policy and Souzi Makri the chair of AGORA Board pointed out as the main problems that Serbian people with RMDs face the delay of diagnosis and referral to the right specialist the limited access to latest treatment and the importance of keeping people with RMDs active and productive by ensuring a friendly and accessible working environment through the right legislation.
The representative of the ministry of health and ministry of labor promised to consider the problems and start a closer cooperation with the doctors’s and patients’s association in order to improve the current situation.
EVALUATION OF THE CONFERENCE
The overall feedback on the 2012 AGORA conference was very high with very good quality and the topic was very interesting for all participants. 90% of the participants stated that the conference was beneficial for them and that they were very satisfied and their expectations have been met or exceeded.
80% of respondents indicated that AGORA projects have a huge potential for all AGORA members and can be adjusted and implemented by their organizations. EUMUSC provides some standards of care for OA and RA that are important lobbying tools for better health care services in the AGORA members states and also the data can be used to make comparisons between countries.
“The partners in treatment project has a huge potential for all AGORA members and all can implement parts of the results of this project in their own country. It is relevant for all members”
“Very useful to hear AGORA examples, and to see that some AGORA members have already started implementing self management programs”
“I enjoyed the presentation very much because Claire has so much experience in this field, that all could learn so much from her. And she is very committed and flexible to think how the program can be adjusted to different contexts or different countries.”
“Very comprehensive and well structured the presentation from Marija Kosanovic the Vice President of the Association of Rheumatic Diseases Patients of the Republic of Serbia (ORS), It was very good way to know our host better.”
“Obviously one enjoys the conference dinner. Apart that it was a nice place to be, it gives the opportunity to socialize with the other participants in a relaxed way and so get to know each other better.”
Our special thanks To all of those who contributed to the outstanding success of Agora inaugural meeting and to our partners BMS, MSD, Roche and Abbott without their generous support 2012 Agora conference would not have taken place.