Patients’ Rights and Safety EPF Working Groups Move Forward


Two internal EPF Working Groups gave the opportunity to our members to focus on patients’ rights and safety, fuelling our future advocacy work in these fields.

The EPF internal working group on patient empowerment met on 18 October in Brussels. The discussions focused on patient rights, with the objective of discussing existing instruments and developments in this area, identifying universally acceptable key rights, and to discuss the inclusion of patients’ “responsibilities” and how to address them.

Following an historical overview of patients’ rights, participants then focused on existing rights charters and other relevant documents, such as the IAPO principles of patient-centred healthcare and the EPF empowerment Charter.

The group then moved on to discuss the development of the “patient empowerment toolkit”, which EPF is committed to delivering by the end of 2017. By way of background, different formats were presented, including the EPF Fundraising toolkit and the IAPO toolkit on patient safety. The group agreed that the toolkit should be aimed primarily at helping patient organisations in their advocacy, and should encompass both information and practical guidelines and resources. Each section could have a case study or good practice to inspire readers. Evaluation will of course also be included.

As a next step, EPF will do a simple needs assessment with the membership, and aim to collect case studies of successes and challenges. The Secretariat will also produce a project timeline for the work to be done next year.

Patient Safety – Capacity-Building

On the following day, 19 October, a one-day capacity building session took place in patient safety to give an opportunity for the working group members and other interested patient representatives to get an overview of patient safety as a topic in EU health policy.

EPF presented its previous work in this area, as well as the role of the EU and relevant EU legislation. The session focused more on general patient safety rather than medicines and devices safety, which is covered by the respective regulatory frameworks and forms an entire large topic area in its own right.

The floor was then given to guest speakers: Jeni Bremner, of the European Health Futures Forum reported that key problems are the significant underreporting of incidents, partly through fear of reprisals; and that errors need to be understood more often as system failures rather than individual failings. In her thought-provoking presentation she concluded that moving to a new “patient safety culture” will requires major shift also of emphasis – from targets focussing on process to targets focussing on outcomes, and patients’ meaningful involvement in care.

Dr Dominique Monnet, from the ECDC then gave an overview of the challenges of antimicrobial resistance and healthcare-associated infections. The data presented by Dr Monnet, very much new and eye-opening to the participants, generated a lively discussion. Modern medicine is not possible without effective antibiotics, and therefore the threat of resistance is very real particularly for patients with chronic conditions who come more into contact with healthcare organisations. EPF has already been participating in the OECD’s European Antibiotic Awareness Day, and the meeting participants felt that this is an area where patient groups can make a significant contribution and where awareness should be prioritised. 

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