Table 2 Proposed solutions to main challenges

Proposed solutions to accommodate diversity

 - Diseases could be combined under broader disease domains when dealing with a patient body with a large diversity of diseases or disease types.

 - Family caregivers or entrusted physicians can participate as patient advocates when participation is not possible for certain patient groups due to their disability, or when no patients willing to participate can be found because the prevalence of the disease is low.

 - A participant profile can be made, including what skills are needed for specific PP activities or tasks.

 - A database of patients interested in participating in the funding process can be set up, including their background, skills and interests in order to link them to the above-mentioned profiles. Patients with different skills, background, educational level can join different PP activities.

 - Training can be organised for patients who are willing to participate, before deciding whether or not they are capable of participating in certain activities.

 - Cooperation can be established with local organisations that work with target groups which are harder to reach (e.g. ethnic minorities, people with low SES).

Proposed solutions for patient training

 - A ‘chief listening officer’ can be appointed, to listen to the participatory wishes and needs of patients and to give an overview of bottlenecks experienced regarding the prerequisites for effective participation.

 - It can be acknowledged that there is a limit to the willingness and capacity or workload of patients, and a central point (or person) can be set up where patients can indicate their capacity (changed) or manageable workload.

 - An incentive can be provided in the form of a reward for researchers who commit to establish a dialogue with patients (on their own initiative and in their own way).

 - Contact days for groups of researchers and patients can be facilitated, in order to bridge the gap between them.

 - Training days for researchers can be facilitated, with possibly patients providing training sessions on ‘how to meaningfully interact with patients’.

 - A HF employee can be appointed to answer questions from researchers on how to contact and have a successful dialogue with patients.