Table 2 Points to consider in collaborative projects between pharmaceutical industry, academia, and patient organisations for grant-funded collaborations

Patient organisations’ points to consider in collaboration with industry and academia

Need financial resources from funders to allow patient organisation to hire professional staff

Lead representative of patient organisation needs to be on the management committee of the clinical study programme

Regular (weekly) contact with the consortium is crucial

Patient organisation needs to meet regularly with its patients to make sure it understands their needs properly. Also, needs to carry out regular surveys to gather information on patient satisfaction

Patient organisation can be faster than other—such as medical institutions—at reimbursement of patient travel expenses, which otherwise can cause problems and increase patient drop-out due to administrative matters

Academia’s points to consider in collaboration with industry and patient organisations

Dialogue between academia and patient groups before, during and after the study programme enables projects

Close and real co-operative links between academia and patient groups empower partnership to make the maximum use of skills

Academia will not necessarily have the clinical study skills and a good relationship with the pharmaceutical partner is essential for success

In addition to contributing effectively to the scientific aspects of the project, pharmaceutical partners bring irreplaceable regulatory expertise needed for successful conclusion of the project

Recognition and devolution of activities better delivered by the most appropriate partner allows smooth project flow and less obstacles to successful completion

Pharmaceutical companies’ points to consider in collaboration with patient organisations and academia

Ensure adherence to international and national laws and regulations on industry engagement with patient organisations and healthcare professionals

Consider ethical aspects in patient recruitment and handling of privacy and security of any personal information when patient organisations are involved in recruitment activities

Understand and respect integrity, credibility and independence of the patient organisation and researchers

Understand and respect the patient organisations’ and researchers’ working environment and constraints

Transparently disclose cooperation

Ensure formalised contracting, with clear expectations and roles and responsibilities, prior to start of collaboration