EFA Patients best practices
As an alliance of 42 patient associations, we can coordinate our strengths by understanding what are the successful stories within our different members states organisationsfrom different countries and learning from each other about the best practices.
Our partner and host Federasma e Allergie Onlus, shared the good results they achieved with their campaign “Changing Patient-Doctor relationship”. They prepared a four days meeting with patients where they raised awareness and gave educational support on asthma and allergy treatment and self-management, combined with a strong social media promotion.
The patient centred-care and participation is one of the biggest concerns. In Spain, FENAER started an educational management programme for asthma patients that proved to be effective in four ways: it reduced hospitalization, emergency room visits, lost work/school days and days of systemic corticosteroid treatment. After this success FENAER is now looking to develop a free online asthma coaching programme for low income families of children with asthma.
In Sweden also, they are very concerned about the difficulties patients with COPD find on treatment and care. The Heart and Lung Association created a survey that showed that “4 out 10 people with COPD don’t know if they are getting the right treatment”. This conclusion helped raise awareness among COPD patients and the general public, stakeholder and institutions.
Impactful messages were also one of the tools used by Asthma Society of Ireland, who created a hard reality video for their Asthma Awareness Campaign under the title “Asthma kills 1 person a week in Ireland“. The video turned up to be a hook among media becoming a very successful tool to raising awareness in Ireland of unnessaryunnecessary pain and suffering caused by asthma.
Our environment is also a continuous concern in airways diseases, and the focal point for Longfonds. They harnessed the public and patients to raise awareness on air pollution for a national air quality strategy. How? By developing a mobile app that makes visible air pollution and disseminating and promoting it through a catchy video.
In Norway, NAAF deployed different resources for their awareness campaign “Pollenfrisk”, focused on pollen allergy. They went to universities, colleges and workplaces, establishing stands where they offered free allergy tests and information about allergy. The campaign is ongoing and has increased the knowledge young people have about allergies.
Finally, research is another pillar for our action. FFAAIR in France developed a survey whose conclusion was looking forward to raise awareness about the importance of medical monitoring for quitting smoking. The impact of this survey resulted in an open letter to the Ministry of Health, of Finance, to Social Security Directorate, a response from the Ministry of Health and a meeting with Social Security Directorate in November 2016. This led in a new law for reimbursement for nicotine substitutes to help quit smoking.
Finally, Asthma UK, also aware of the importance of research and awareness rising in asthma, invested in research prioritising by elaborating and disseminating reports; videos and pics linking to the research gaps identified by the EARIP Project.