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“From Research to Clinical Practice”
Basel, 13-14 January, 2011

With the 7th joint Workshop, EGAN and Roche continue their productive and constructive cooperation and give again a prime example demonstrating how patient advocacy groups and industry can efficiently cooperate and contribute to promote health. Participants from academia, patient organisations, health authorities and industry attended this year´s Workshop to discuss topics of common interest and develop strategies and recommendations aiming to serve as a basis for further actions. In 2011, the Workshop focused on steps to improve the long process from basic research to clinical practice, including better patient involvement:


The following recommendations have been developed by the Workshop participants with the objective of contributing to health promotion through effective clinical research and practice:

  1. Promote stakeholder cooperation very early on in the research process; by bringing academia, patients and industry together to identify research targets that address true patient needs for their medical conditions.
  2. Acknowledge and communicate the importance of basic research and how it is at the core of scientific progress even when the translational impact and thereby clinical benefit is not straightaway evident.
  3. Develop and promote a harmonised and transparent framework during the long process from research to patient access, particularly in the fields of clinical research and HTA, by fostering harmonisation.
  4. Promote the acknowledgement and use of “soft endpoints” in clinical trials, such as Quality of Life and consequences for family members and/or carers, which are not directly associated with the disease process, and which therefore require different approaches to be effectively assessed.
  5. Strive for a balance between hard and soft endpoints in clinical trials to represent a holistic, patient-relevant picture of the whole treatment.
  6. Modernise and enhance the current clinical trial process to:
  • Adapt it to the changing understanding of our biology and of the drug development environment.
  • Find ways to shorten the process by avoiding complications through harmonisation and in concentrating the trial design on the essentials.
  • Acknowledge the concept of personalised healthcare as a completely different healthcare paradigm.
  • Use the upcoming revision of the EU Clinical Trials Directive as an opportunity to achieve improvements in various areas, e.g. to address the impact of stratified medicine and drugs for small populations.
  1. Increase patient participation in clinical trials by developing communication strategies to work with physicians and investigators with the aim of better informing patients and their families.
  2. Strengthen the communication capacity of patient organisations to interact with regulatory and reimbursement authorities. As there is still a lack of patient perspectives in some European countries: patients need to be able to engage effectively with their national authorities to ensure patient views are duly regarded throughout the entire thought- and decision processes. 
  3. Enhance communication between patient groups on European and national levels to ensure that patient groups speak with one voice at the EU level. Patient representatives of pan-European organisations need to recognise the role of national patient bodies and foster discussion about strategies for effective patient involvement at the national as well as the EU level.
  4. In addition to disease prevention, promote effective chronic disease management to reflect the demographic shift towards an increasingly older population that is more likely to suffer from chronic disease.

The above recommendations have been developed by EGAN and Roche as an outcome of the Workshop deliberations and discussions and are meant as a basis for further actions.

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