Meaningful involvement of People Living with Diabetes in Research Projects

31 August 2022

Over the past few years, the value of “patient engagement” has increasingly been recognised, most notably in its ability to improve quality of life and health outcomes. According to the World Health Organization, patient engagement refers to “the process of building the capacity of patients, families, carers, as well as healthcare providers, to facilitate and support the active involvement of patients in their own care, in order to enhance safety, quality and people-centredness of healthcare service delivery”1.

IDF Europe is a diverse and inclusive multicultural network of national diabetes associations, representing both people living with diabetes (PwD) and healthcare professionals. #NothingAboutUsWithoutUs is one of our mottos, ensuring that people living with diabetes should be at the centre not just of their care but also of any study, treatment and/or medicine and device development, and that their experiences, needs and perspectives are reflected at all stages, and not just during treatment.

IDF Europe is currently a member of the EU-funded Innovative Medicines Initiative project, Trials@Home, which aims to reshape clinical trial design, conduct and operations, by developing and piloting standards, recommendations and tools for the definition and operationalisation of decentralised clinical trials (DCTs) in Europe. Within this project, IDF Europe has established a Patient Expert Panel (PEP) which represents the voice of people living with diabetes across all Work Packages (WP) and Working Groups (WG). Its man objectives are to identify unmet needs, preferences, and other matters of importance to the diabetes community and support the implementation and dissemination of the study. The PEP has, for example, contributed to the selection of vendors, the development of an inclusive informed consent process, the drafting of a communication and messaging framework for the patient-facing website and recruitment material; reviewed training materials for people in the trial; and participated in various other activities.

Beyond their expertise as people living with diabetes, important factors in the value of the PEP are the multicultural and social dimensions brought by its members. The seven PEP members come from all walks of life across Greece, Netherlands, Portugal, Romania and the UK, while the current PEP coordinator, also living with diabetes, is from Croatia (replacing the previous coordinator from Belgium).

On June 7 and 8, nearly two and a half years since the kick-off meeting in Paris, Trials@Home hosted a hybrid semi-annual meeting, attended in person or virtually, by more than 100 delegates.

On June 7, the Patient Expert Panel was first on the agenda during the session “Patient engagement in Trials@Home”. In this session, time was dedicated to an open discussion to identify what matters to the PEP in the Trials@Home project/RADIAL study and how they want to be engaged, and what the consortium partners find valuable in terms of the engagement they have with the PEP.

Later that day, two PEP members, Kostas Tagkalos and Ken Tait, took part in a panel discussion “DCTs – Improving public trust and engagement in research” where they commented on the future of RADIAL and clinical trials generally and the required co-creation with patients.

On June 8, PEP members also had a key role in a session discussing a discrete choice experiment (DCE) to elicit patient preferences regarding trial design. Ken Tait and Kostas Tagkalos discussed the list of attributes which had been prepared in the first step of the DCE.

The main conclusion from the consortium members was that the PEP contribution was highly valuable, and IDF Europe and the PEP members are looking forward to participating again during the annual meeting in September, in Wuppertal!

The current PEP members are Cristina-Maria Petrut (Romania), Erik Werson (Netherlands), João Valente Nabais (Portugal), Ken Tait (UK), Kostas Tagkalos (Greece), Mark Duman (UK), Theofaneia Tsachalina (Greece).


1Patient Engagement: Technical Series on Safer Primary Care. Geneva: World Health Organization; 2016. Licence: CC BY-NC-SA 3.0 IGO.