Implementation of experts by experience in hospitals: No one-size-fits-all solution but an experience-based co-design (EBCD)
Authors: Van Doren Shauni , Jacobs Laura , Castro Eva Marie 
Published: January 2024

Experts by experience are defined by as long-term service users that have experience with a particular disease of disability. Through that experience, they have gained vast knowledge about it and about the health care services they use. Additionally, they possess the appropriate competencies (i.e. skills and attitude) to bring their knowledge into action. In that regard, we can identify experts by experience as valuable co-producers of care.

The implementation of experts by experience is guided by the results of a pilot study on conducting participatory action research. This PhD-study concludes that the outcomes of the involvement of experts by experience heavily depend on the context and the target group. Using an Experience-Based Co-Design (EBCD), we can successfully implement the experts in their respective departments. EBCD is an approach to health service design that engages patients and staff in partnership to develop and improve health services or pathways of care.

Starting June 2021, the University Hospital Leuven (UZ Leuven) implemented the use of experts by experience in several hospital departments. Several other hospitals in Flanders (i.e. AZ Jessa, AZ Voorkempen) have followed or plan to follow (AZ Maria Middelares, ZNA) their lead. These hospitals recruited Trefpunt Zelfhulp to apply the EBCD at the different hospital wards.

Trefpunt Zelfhulp is a support center at KU Leuven that strengthens self-help groups and patient organizations by providing hands-on assistance and training. Together with hospital staff and the experts by experience, they created a shared vision of care and participation. Trefpunt is responsible for the recruitment, selection, training, coaching and support of the experts by experience.

Although the level of involvement of the experts by experience varies across the hospital departments, their core task is the same. Trained experts by experience can fulfill three major tasks in a hospital; (1) connect with people having similar experiences in the department through one-on-one contact, (2) play a pivotal role between patients and practitioners, (3) identify areas of quality of care improvement in the department.

The profiles of the experts by experiences can also vary widely. In some cases, the expert by experience is a patient, while in other cases the parents or partner of a patient with a specific condition are the experts. The latter group can also be trained to provide support to patients’ close network.

Due to the COVID-19 pandemic and restrictions that were in place at hospitals, the implementation process and the outcome of the EBCD were affected. Face-to-face contact between the experts by experience, the staff, and patients was not allowed during this period. This requires a shift towards a hybrid and sometimes fully online approach for the selection and training of experts and the organization of intervisions between staff and experts. Some of these changes are advantageous, as the hybrid approach makes the collaboration in this co-design easily accessible for all parties concerned (i.e. it saves time and money). However, during this time  also has a major impact on staff turnover in the hospitals.