A survey on risks and Benefits for patients and families

The Welsh Institute for Health and Social Care (University of South Wales) and Genetic Alliance UK work in partnership on a second Risks and Benefits project.  This work will ensure that the patients’ perspective is understood and valued as part of regulatory decision making processes for new medicines.The original Risks and Benefits project took place in the UK in 2011. Based on a Citizens’ Jury model, the research examined how individuals affected by serious and/or rare conditions perceive the balance between the risks and the benefits of new medicines.

The full report can be accessed via this link: http://www.geneticalliance.org.uk/docs/citizens-jury-report.pdf.

Risks and Benefits II aims to extend these findings. The project leaders will validate the original project findings against wider groups of patients and families in order to test their meaning and importance more widely in Europe.

In addition, they will disseminate the findings and develop practical recommendations for the European Medicines Agency (EMA), national competent authorities and other organisations involved in medical scientific decision-making across Europe.  EPF has agreed to support this process and play and advisory role within the project.

As part of this work, an online survey for patients and families affected by rare and/or serious illnesses will be distributed across patient networks in Europe, in a variety of languages.

The survey is currently being developed, and further updates are available on both the WIHSC and Genetic Alliance UK websites: http://wihsc.glam.ac.uk/ and http://www.geneticalliance.org.uk/

If you have any questions about the project or the upcoming survey, please get in touch with the project team on +44 (0) 1443 483070 or amy.simpson@southwales.ac.uk.