Dr Carme Hernández is the Director of SeparPacientes together with Dr Eusebi Chiner. In this interview, we ask her about the committee’s activities and how it is helping to bring people living with lung conditions in Spain into the work of the Spanish Society of Pneumology and Thoracic Surgery (SEPAR).
SeparPacientes was formally created by the Spanish Society of Pneumology and Thoracic Surgery (SEPAR) in 2009, the SEPAR Year of the Chronic Respiratory Patient, which was organized by Dr Joan Escarrabill. Up until that point, as a scientific society, SEPAR primarily dedicated its attention to educating its members and to the research and development of high-level cooperative projects. It did not, however, incorporate specific activities dedicated to patients, and in particular did not involve patients in order to create a cross-sectional project.
SeparPacientes was created to abandon the traditional relationship – of a paternalistic nature – between healthcare professionals and patients and to move towards co-responsibility and patient participation in decision-making. The initiative actually launched in 2007, coinciding with the 40th SEPAR Congress in Barcelona, where patients attended the sessions of the congress for the first time. The Spanish drug regulation policy (FARMAINDUSTRIA) has made it difficult for us to allow patients to attend our congress, but fortunately it has not stopped us, and we continue to welcome patients each year. Our aim is to implement alternative initiatives, which have become very successful: they are creating many happy memories, are greatly accepted by professionals and much appreciated by patients and patient associations. Today, SeparPacientes is an advisory committee, directly dependent on the presidency of SEPAR, and with the same level of responsibility as the scientific and research committees.
SeparPacientes’ main objectives are to:
SeparPacientes has a network with 85 hospitals called Aulas Respira, which organises sessions for patients on several topics: sleep apnoea, COPD and physical exercise, mechanical ventilation, rehabilitation, etc. More than 5,000 patients participate annually, and more than 60,000 have taken part since the network was created.
We also develop specific information documents within each working area that are aimed at patients. They have a scientific basis but are also friendly, attractive, direct and understandable and include references, web links, recommended documents, etc. Similarly, we have developed comprehensible material on home respiratory therapies aimed at patients. We also have a programme called A tu aire, step by step (At your own pace, step by step), aimed at encouraging physical exercise in people with lung conditions. This consists of walks and hikes in different Spanish cities, adapted for people of different abilities. For example, there are indications of distance, gardens, resting points where you can look at a cultural landmark, where to recharge portable oxygen backpacks, etc. All the material generated by SeparPacientes, including a regular newsletter, is hosted on our website, where it can be accessed for free and is available for patient associations to include on their websites if they wish.
In addition, for the second consecutive year we have organised the “breathing together” Patient Congress, which reached about 300 attendees at each of its two editions (in Barcelona and Madrid) and had a high level of participation. It is organised jointly with all associations of respiratory patients in Spain. From an institutional point of view, SeparPacientes grants endorsements and gives recognition to activities developed by and for patients, requested by associations or professionals, at no cost.
In 2017 and 2018 we organised the SEPAR Year of respiratory challenges, dedicating each month to a condition, such as lung cancer, asthma, and sleep apnoea; or a topic like home therapies. In each month the Aulas Respira took place – a lot of hard work was carried out. There were activities for awareness and activities with patients. For each challenge, documents and a video were produced – all of which were agreed upon between the professionals and the patient associations.
In the context of the SEPAR Year, we set ourselves the objective of organising our annual congress, which proved to be a success, with the joint participation of professionals and patients. A key element in the organisation was the mutual democratic consensus to produce the programme, jointly choosing the most popular proposals among the many presented.
This year’s ERS International Congress will take place in Madrid, Spain. Could you talk about how SeparPacientes will be collaborating with ELF to get patients involved in the Congress?
SEPAR and SeparPacientes will be involved and represented in many of ELF’s activities during the ERS Congress in Madrid. We will be a part of the Healthy Lungs for Life public event, where a large group of qualified nurses from hospitals in Madrid will be offering spirometry tests, health information and advice on quitting smoking. We will have a booth with different Spanish patient organisations in the World Village of the congress centre, where we will provide information about our activities aimed at healthcare professionals and representatives of other European organisations, so that we can share experiences. We will also be participating in the ELF Patient Organisation Networking Day. SeparPacientes intends to work closely with ELF, and a good way to start is by getting involved in the ELF activities at Congress as well as disseminating these through our website and by bringing in other patient associations.
We are currently preparing our third annual congress. In 2018-2019 we are also actively participating in the SEPAR Year of pneumonia coordinated by Dr Charo Menéndez. As part of this, we have created a new Aula Respira devoted to pneumonia that will be very interesting and attractive, because many professionals – doctors, nurses, physiotherapists – and patients have participated in its development.
We would like to extend the healthy walks project and call for the second short stories award. We have already published the call for the fifth edition of SeparPacientes Awards and now we must complete the first phase of the documents for patients, publishing them on our website and communicating them. Every year we also organise a symposium within our annual congress; this year it will be dedicated to strategies for giving information to patients.
These activities are challenging but also very rewarding, for us and for patients and patient associations. It involves a lot of communication: discussing, proposing, negotiating, giving in, reaching a consensus…almost all the verbs related to struggle, illusion and affection take place in SeparPacientes.
