Exploring patients' and the public’s information needs on medicines research and development

Who is sending out this survey and why?
This survey has been developed by a team of collaborators (from public and private organisations) who are led by the University of Manchester and the European Genetic Alliances Network as part of their work on a European Commission and Innovative Medicines Initiative funded project - the European Patients’ Academy on Therapeutic Innovation (EUPATI) (www.patientsacademy.eu).

EUPATI aims to develop more reliable and accessible information for patients and the public on the research and development of medicines by the pharmaceutical industry. The project came about due to recognition that medicines research and development is a long, complex and expensive process. This can make it difficult for patients and the public to be aware of, to understand or to get involved in it.

Developing better information for patients and the public will help to increase their awareness of, and involvement in medicines research and development, which will lead to better, safer treatments and to more patient focused research and outcomes. Therefore, we are undertaking this survey to find out your current interest, knowledge, awareness and experience of medicines research and development, to identify your information needs and your preferences for information format.

Advice on completing the questionnaire
Taking part is voluntary and involves completing an online questionnaire. This takes about 15 minutes to complete. The answers should be given from your viewpoint.

The results will be written into a report and will feed into the development of materials for patients and the public around medicines research and development.

Your answers are confidential. Individual responses will never be presented or disclosed. We will share the combined results with patient groups and present summarised findings at conferences and in journal publications, press and newsletter articles. Data will be securely and confidentially stored by Nowgen, in accordance with the University of Manchester’s data protection policies.

Please pass on the questionnaire to others who you think might be interested.