Patients drive change to ensure involvement in healthcare systems

Liam Galvin

Secretary, European Federation of Idiopathic Pulmonary Fibrosis and other Related Disorders (EU-IPFF)

Patients have previously been seen but not heard. At the European Federation of Idiopathic Pulmonary Fibrosis and other Related Disorders (EU-IPFF), we would like to change this. Involving patients in the decision-making process of their own care pathway would appear to be logical and common-sense, but from experience, this is often not the case.

Due to the increased use of online forums and patient advocacy groups, we have been seeing a shift in attitude throughout the past few years. In addition, the European Union has spearheaded patient recognition by passing legislations and structuring its institutions to include patients. In addition, multiple initiatives have been taking place across Europe aiming at including patients in relevant decision-making processes in a more structural way. This has led to a generation of patient experts and advocates representing their patient communities in areas such as the development of drugs, approval systems, patient care pathways and increased use of multidisciplinary teams.

Advice from patient experts and advocates

The benefits of patient involvement are especially relevant in rare diseases, such as IPF. By allowing patients to advise industry representative on symptoms, the care pathways and what the priorities for patients are, patients have the opportunity to steer research in an effective way. In addition, patients can assist with trial design to maximise recruitment, provide input into lay communication tools and much more.

Bringing together patients, healthcare professionals, policy makers and industry

At EU-IPFF, we wanted to take this a step forward and provide patients a voice in congresses. Therefore, we have created the first IPF Patient Summit, whereby patients and healthcare professionals are working hand-in-hand to develop the programme, abstracts, speaker outreach and more. The three-day event will be a unique platform to discuss research, person-centred care, policy and advocacy around idiopathic pulmonary fibrosis and interstitial lung diseases.

It is key to bring together patient groups, healthcare professionals, policy makers, as well as industry representatives to open the dialogue to make patient centricity and patient involvement a priority.