Relationship with Patient Groups - Making sure we hear them loud and clear

Patient groups have given patients a stronger voice. They are involved in disease education; provide help lines, emotional support, and access to treatment. They are also crucially engaged in discussions about the healthcare system. The scope of their work is expanding to include collaborations with a number of stakeholders, including pharmaceutical companies, on projects ranging from raising public awareness of specific diseases to facilitating participation in clinical trials of innovative medicines.

EFPIA - EU Legislation

Although patients’ organisations and pharmaceutical companies have very different starting points, they recognise that on many EU policies, they may share common interests and work together towards achieving the same policy goals, without compromising their independence. Patients’ organisations bring their own unique knowledge on the challenges of living with their particular illnesses. They bring home the daily battle and courage shown by patients and demonstrate how far medical progress can make a difference to their lives and the lives of those who are close to them. This is a powerful reality check for those involved in policymaking.

Where further innovation is needed to help patients, the Innovative Medicines Initiative (IMI), Europe's largest public-private partnership, has been created to speed up the development of better and safer medicines for patients. IMI has ensured direct patient involvement in several projects, including the PROactive project, which aims to improve care for patients with chronic obstructive lung disease. The patients themselves lead some of the individual projects and are called upon for advice.

EFPIA members continuously work to ensure that their Code of Practice on Relationships between the Pharmaceutical Industry and Patient Organisations underpins the industry’s interactions with patients. The code of practice sets out clear principles for maintaining transparent and ethical relationships with patients, in order to ensure the patient’s independent voice. Many EFPIA member companies have published lists of the patient groups they sponsor.

The pharmaceutical industry’s European Academy on Therapeutic Innovation (EUPATI) provides information to patients on pharmaceutical Research & Development and is coordinated by the executive director of the European Patient’s Forum.

"Everybody recognises that there are many unmet needs for most patients with life-threatening diseases. Patients know their needs best but rarely have the broad know-how on how the highly regulated and complex R&D process works. Our Patients' Academy aims to address this by educating patients about the medicines development processes. We know it can be done."
Nicola Bedlington, Executive Director of the European Patients' Forum and project coordinator of EUPATI.