The EFPIA Patient Think Tank established the Health Collaboration Awards in 2015, to share best practice in collaborative projects that address healthcare needs. Entrants include collaborations between patient organisations, industry, local authorities, healthcare systems and other key actors in delivering healthcare.
The winners of the 2016 edition of the Awards were announced at the Health Collaboration Summit, which took place on 9-10 November, in Brussels.
This week, we focus on the winner of The Prevention and Awareness Award: To live with epilepsy.
In Spain, over 400,400 people live with epilepsy and each year more than 20,000 cases are detected. “Vivir con epilepsia” is a specially designed web-based project focused on epilepsy, aimed at enhancing knowledge of the condition and at sharing experiences amongst patients. An epilepsy community has been created through a multidisciplinary approach to drive inclusiveness and enhance the quality of life of those who suffer from epilepsy.
The goals of the project have been to: establish a durable, coherent digital ecosystem, over the web, entitled ‘Living with Epilepsy’, which offers and disseminates comprehensive information on topics about epilepsy; create a digital community on epilepsy in which sufferers, carers/families can share experiences, be heard, followed and interact; show UCB’s commitment in this area through a non-branded project, aimed at improving patients’ quality of life; and set up a channel to offer support to the different epilepsy patient programmes that UCB is developing. Digital channels also included a blog, and outreach through social media to reach patients and healthcare professionals. Furthermore, an awareness campaign, “Knowing epilepsy makes us equal”, serves as a tool for schools to help reduce stigma among young people.
Patient Benefit from the Project and How it Was Measured
The main benefit for patients is the normalisation of the disease in the eye of the general public. The campaign wants to improve the day-to-day life of people who suffer epilepsy and fight against stigma and social exclusion. The website Vivirconepilepsia.es registered 66,608 visits, 54,074 unique users and garnered 105,853 page views. Regarding the awareness campaign “Knowing epilepsy makes us equal”, this was downloaded over 700 times, received almost 1,300 page and registered more than 1,100 unique users who have seen part or all the campaign. There have been 1,260 visits to the video via Facebook and the hashtag #VivirconEpilepsia has secured 2,500,000 impressions in total, produced from 500 tweets from 316 different participants.
The majority of teachers praised the usefulness of the initiative in terms of knowing how to react during an epileptic attack and students have shown a great interest in the campaign, most of them changing their view of the disease and the stereotypes it has generated.
Innovative Elements of the Project
The website “Vivir con epilepsia” offers new opportunities to increase knowledge about epilepsy. This is accompanied by a complete digital ecosystem (blog, Facebook and Twitter), with quality content, updated weekly.
The campaign “Knowing epilepsy makes us equal” is designed for children aged 7-12 years. The campaign offers an educational tool, such as a teacher’s manual, and a storybook for children through which they are made aware about how to manage an epileptic seizure in a simple, but effective, way.
Collaborative Elements of the Project
The pharmaceutical company UCB and the Spanish Epilepsy Patient Federation (FEDE), supported by the Spanish football champions league team “Atlético de Madrid”, joined doctors, patients and the general public in several initiatives focused on reducing the stigma of epilepsy in Spain. The education campaign was approved through a compliance process, which respected and was in line with the principles of the EFPIA, Code of Practice on relationships between the pharmaceutical industry and patient organisations.
By directing digital communication over Social Media we showcased a transparent management of the content and offered direct participation in line with patients’ needs. The digital communication process involved the departments of medicine, compliance and pharmacovigilance. All the communication experts involved in this project were taught and prepared by the pharmacovigilance department.0