Personalised medicine is both a big opportunity for patients but also a necessity for many people living with a chronic diseases whose severity does not respond to widespread treatments. On March 21st, EFA participated at an event dedicated to personalised medicine organised by the permanent representation to the European Union of the German Land Baden-Württemberg.
Personalised medicine is a new hope for patients with allergies and airways diseases. While there is not yet a cure for these chronic diseases, personalised medicine brings the potential of having more efficient and targeted treatments for patients. It could lead for better quality of life and healthier years.
Following the opening speech by Minister Manfred Lucha, representatives from the European Commission, medical and patient groups discussed the current challenges towards personalised medicine, and how obstacles could be overcome.
Personalised medicine needs to be made useful for patients
Being a trained nurse, Manfred Lucha, Minister for social affairs and integration, emphasised the need for more personalised medicine, pointing that “Health is not a condition but an attitude of life.” While the technological basis is already available, the challenge to be tackled is how to make it useful to people.
As an approach to improve care, Minister Lucha presented the Land Baden-Württemberg strategy on digitalization in medicine and care which includes four sectors: care, treatment, participation and centres for personalised medicine.
Difficulties in bringing personalised medicine to the patients
Irene Nordstedt, Deputy Head of Unit Personalised Medicine at the European Commission Directorate General on Research and Innovation, focused on the issue of how to bring personalised solutions to the patients.
She outlined the interrelation of big challenges on personalised medicine such as data and information and communication technology (ICT), research efforts, different health systems and market access. While being a great possibility for patients, Ms Nordstedt showed with regret that only 53 of 135 analysed regions within the EU prioritize personalised medicine.
Institutional changes required – no innovation without participation
The available technologies nowadays provide a degree of personalisation that has been impossible to achieve in the past, said Prof. Dr. med. Nissar Malek, University Hospital Tübingen, Germany. However, an important question remains on to encourage the use of these technologies broadly at a regional level.
In his proposed task-list, Prof. Malek demanded among others institutional changes within hospitals, collaboration between medical centres on a national and international level, training and empowerment for patients and doctors, as well as sustainable reimbursement.
In order to get the most out of personalised medicines to the benefit of patients, Prof. Malek emphasized that patients need to be included in the process since there is “no innovation without participation”.
Patients need more information on personalised medicine
Isabelle Manneh, Head of Health & Research Programmes at the European Cancer Patient Coalitions (ECPC), brought the patient’s perspective into the event. She regretted that many health care professionals are hesitant to inform patients on possibilities regarding personalised medicine. Further, that there is a too big uncertainty for patients when it comes to reimbursement of personalised products.
Panel discussion showed the wide scope of personalised medicine
In the following panel discussion it got clear that, personalised medicine is a broad field indirectly touching on many areas. As Irene Nordstedt pointed, the fact of being personalised is not just about the medicine but also the personalised prediction, allowing not only to treat but to prevent disease.
Prof. Manek highlighted that in order for personalised medicine to be successful, acceptance among the citizens is crucial. Highly personal data needs to be stored and transferred among institutions and even countries. While Facebook, as he put the example, is already highly criticized for its data practices, this is merely a “children’s-birthday” compared to the personal information required for successful personalised medicine.