Patient involvement in clinical research
Importance of patient involvement in clinical research is well recognised. However, patient organisations are not systematically exploited by pharmaceutical and biotechnology companies or other research stakeholders. Incorporating patients' perspectives in the planning, implementation and monitoring of clinical trials could produce therapies that are better adapted to the needs of the patients. The aim of the EU-funded PATIENTPARTNER project was to generate a communication platform and guidelines that support collaboration between patient organisations and clinical trial professionals. Over 200 patient organisations for common and rare disorders responded to the survey. Nearly 80 % were involved in clinical trials or research. They provided information regarding a disease, availability of patients to enter a clinical trial, review of clinical trial protocols and the informed consent process. Interviews revealed that patient organisations are essential for providing information on opportunities for patients to get actively involved in clinical trials. The generated PATIENTPARTNER inventory formed the basis for a series of Europe-wide and regional workshops, where the two sides exchanged views on how patient organisations could become partners in clinical research. Although evidence showed that this partnership can be achieved, concerns were raised regarding the potential regional differences in patients' attitudes, interest and level of involvement in clinical research. The PATIENTPARTNER dialogue emphasised the need for raising awareness on the importance of patient involvement in clinical research and for training clinical personnel appropriately. An overview of best practices in the involvement of patients in clinical trials was presented. To support this interaction and enable stakeholders to find the right partners, establishing a clinical research database was deemed to be essential. PATIENTPARTNER underscored the importance of using patients and patient organisations as a paradigm for improving the quality, quantity and effectiveness of clinical research. The need for making connections between patients and stakeholders was addressed through guidance material and policy recommendations. Collectively, these measures will hopefully increase the rate of enrolment of trial participants and have a positive effect on the performance of a clinical trial.
