Re: Patients and healthcare conferences: what does true involvement look like?
To the Editor,
We read with interest the “Observation – Patients and healthcare conferences: what does true involvement look like” published in the BMJ in March. We agree that the involvement of patients in healthcare conferences is a major step forward in making healthcare a collaborative process from beginning to end, with patients and healthcare professionals working together to ensure the best outcomes for all. We would like to share with you our experience of very positive engagement of patients in a major respiratory society annual conference.
The European Lung Foundation (ELF; www.europeanlung.org) is an organisation that was founded by a medical society – the European Respiratory Society (ERS; www.ersnet.org) – in response to a need it identified in communicating the latest respiratory findings to an audience outside of healthcare professionals. However, this role has developed rapidly over the last 5 years to include the facilitation of patient involvement in all of the activities of ERS. Therefore, the current mission of ELF is to bring together patients and the public with respiratory professionals to positively influence lung health, and to do so it has developed a network of patient organisations in the respiratory field from across Europe and the globe. In addition, ELF now has a patient Chair at the helm who sits on the governing body of ERS.
One of the key activities of ELF is related to the ERS International Congress – the largest respiratory meeting globally attracting more than 20,000 people annually. The aim of having patient organisations, patients and carers at Congress is to:
• Present the patient perspective in scientific and educational sessions
• Promote the role of patient organisations
• Strengthen the European and global community of respiratory patient organisations
• Encourage professionals to engage with patient organisations
• Promote the wider participation of patients and patient organisations in healthcare worldwide
Each year ELF invite national and European patient organisations, representing a wide range of respiratory diseases, to take part in the ERS International Congress – they are provided with free registration, an opportunity to display the activities of their organisations in a prime location, opportunities to network with respiratory professionals, opportunities to meet together, and dedicated workshops on topics such as press and media and patient involvement in research. This strong patient organisation presence has allowed these groups to increase their access to the latest findings and research in the area, network with key opinion leaders, and strengthen and grow their relationships with national medical societies and other patient groups for the benefit of their patient members and others affected by respiratory disease [1, 2].
In addition to the presence and role of patient organisations, ELF is at the heart of ensuring patients have a voice in the main programme. The roles that patients play in the scientific and educational programme are wide, varied and increasing each year. They include:
1. As patient speakers in mainstream symposia – in this case symposium organisers identify at the application stage if they believe a patient speaker will add to the session or ELF identify the session as one where the patient voice or view point would be key. The patient speaker is treated in the same fashion as the other professional speakers and full support is provided to the speaker by ELF with regards their presentation and attendance. New this year, ELF has worked with patients who have previously participated in ERS congresses to produce a guide for patients taking part in the congress and a “mentoring” system has been developed to help patients find their way around the congress centre and feel supported.
2. Patients are included in educational courses, as both speakers and participants, to ensure that patients are also at the heart of respiratory education.
3. As part of a “Patient forum” - this is a paid for educational session where postgraduate students or others wanting to gain CME credits can take part in an interactive session. In the session, which is co-designed by a professional and a patient, a topic is presented from both viewpoints in tandem. Last year, for example, the issues surrounding CPAP were discussed with both the patient and healthcare professional giving their viewpoint.
4. In multi-stakeholder workshops. Increasingly, ELF works to ensure that patients are involved in guidelines produced by healthcare professionals and in setting research priorities. This is achieved by a range of methodologies, but often culminating in multi-stakeholder workshops at the congress, where all the key players – including patients, patient organisations and professionals – are present. Patients can now also suggest topics for new guidelines to ERS (http://bit.ly/1pYIIUf).
5. ELF is encouraging patients in their patient organisation network (http://bit.ly/1vcvf9Z) to submit abstracts and symposium applications so that they are shaping the congress programme themselves.
6. Recently, “Meet the expert evenings” have also been introduced as part of the ERS/ELF Healthy Lungs for Life campaign (www.healthylungsforlife.org), in which keynote speakers from the congress speak to the public and patients at open sessions in the city. This gives people direct access to the leaders in the field and the opportunity to ask questions in their own language.
To support this activity, a new module on conferences has also been added to the European Patient Ambassador Programme (EPAP; www.EPAPonline.eu), which is an online course to help patients and carers develop the skills and knowledge to get involved in a diverse range of patient representation activities, from co-producing guidelines and influencing research, to raising awareness through media channels and speaking at conferences.
Each year, patients that participate receive extremely positive feedback from congress delegates, and give great feedback on their experience of taking part, informing ELF that they value being able to educate healthcare professionals in the day-to-day experience of having a respiratory condition and patients’ unmet needs: “I believe that the program provided for the patients associations, including the preparation of abstract, was auspicious. Through the stand we had plenty opportunities to develop new collaborations with medical societies and specialists in the field. I had the chance to discuss the many possibilities for cooperation, including exchange of experience and comparing treatment with patients associations and societies from Russia, Germany, China, Austria, UK, Brazil and Portugal.” – Marius Dumitru, ARB-TB, Romania.
One thing that ELF feels it is key to note at present is that the ERS Congress is a professional meeting and the ELF’s sensitivity to this has been key to the success of the collaboration. The aim is really to bring professionals and patients together to ensure the best healthcare is delivered across Europe and the globe. We think that the partnership between ERS and ELF allows for a true integration of patients in an international healthcare conference and has meant that both the professionals and patients are working in unison, often with common goals, aims and ambitions. Patient involvement is not tokenistic but at the heart of the conference and its organisation.
Dan Smyth (ELF Chair)
2. Fletcher M, Bassi I.Patient voices at the ERS International Congress 2014: highlighting LAM. Breathe 2014; 4: 283-285. http://breathe.ersjournals.com/content/10/4/283.full.pdf+html
Competing interests: No competing interests