Patient involvement

Being actively involved in research and therapy development means much more than being a 'subject' of the research. It means partictipation in setting the research agenda, in the way the research is carried out and how it should be implemented. Your personal experiences of living with a certain illness, combined with those of others, are very relevant to this.

Websites

• EUPATI European Patients’ Academy on Therapeutic Innovation (EUPATI) is an Innovative Medicines Initiative joint undertaking between the European Union and the European Federation of Pharmaceutical Industries and Associations. EUPATI is a patient-driven initiative to change the landscape in the EU by increasing the capacities and capabilities of well-informed patients to be effective advocates and advisors in medicines development. The project was launched in February 2012 and over the next 5 years it will work to create educational modules on all aspects of the development of new medicines. 
  
  EUPATI will make a substantial and measurable difference to patients, providing the tools and the knowledge for their meaningful involvement and empowerment  in pharmaceutical innovation, safety of medicines and access to treatments. It will inform the lay and hard to reach patient community, raising public awareness of the development of new treatments.
   
• INVOLVE is a UK advisory group to support and promote active public involvement in National Health Services, public health and social care research. An active involvement of the public in the research process leads to research that is more relevant to people and is more likely to be used. Research which reflects the needs and views of the public, is more likely to produce results that can be used to improve practice in health and social care. 
   
• People in Research helps members of the UK public make contact with organisations that want to actively involve them in clinical research.  For example this could be by helping to decide what gets researched or possibly carrying out part of the research.
   
• Orphanet is a database of information on rare diseases and orphan drugs for all publics. Its aim is to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases. Orphanet includes a Professional Encyclopaedia, which is expert-authored and peer-reviewed, a Patient Encyclopaedia and a Directory of expert Services. This Directory includes information on relevant clinics, clinical laboratories, research activities and patient organisations.
   
• EPPOSI, the European Platform for Patients' Organisations, Science and Industry, establishes a strong European alliance of patients' organisations, academic science and industry  jointly working on healthcare policies towards treatment and prevention of serious diseases.

Literature

A New Voice in Science. Patient participation in decision-making on biomedical research. Francisca Caron-Flinterman, Dissertation, 2005 ISBN-10:90 9019996 9; ISBN-13 978 90 9019996 2

It's My Life, a new revolution patient power. Simon Rozendaal, 2007. ISBN-13: 978-90-5911-538-5. Twelve patients with rare genetic diseases from all over the world are interviewed. Their stories show a determination to take charge, to make a real difference.