This month EFA features activities surrounding patient EU patient empowerment. It features EFA’s presentation of patient involvement within the EU project U-BIOPRED at a conference on patient empowerment and health literacy, the publication of EFA’s event report on its EMA workshop and an invitation for patients to join EUPATI.
EFA presents U-BIOPRED as model for patient involvement in clinical trials at the 2014 Careum Conference and participates in workshops on patient empowerment
From the 17-18th of March, EFA’s Membership and Programme Manager, David Brennan, participated in the 2014 Careum Conference both contributing to a discussion of the topic ‘Clinical trials and patient participation’ by presenting U-BIOPRED as a model for involving patients in health research and clinical trials. EFA used this opportunity to discuss general issues for patient involvement in clinical trials as well as the different roles patients can provide for research Also joining EFA in presenting on the topic were representatives from the European Patients’ Academy on Therapeutic Innovation (EUPATI), academia and British Medical Journal. The presentation by EFA highlighted the past and ongoing work performed by patients, specifically those involved in the project’s Patient Input Platform (PIP) in U-BIOPRED. This presentation is available to the public for download in PDF format on EFA’s website.
The Careum Conference as a whole broadly addressed patient empowerment and health literacy, which have both become very important topics with increasing patient involvement in healthcare systems at both the European and national levels. On the morning of the 17th, a workshop with Professor Richard Osborne stressed the two topics are very much interrelated. Discussions revealed health literacy not just as ‘good information’ but should be rather questioning whether a patient is in a position to sit down and discuss their health issues with their doctors; as such, a goal for health literacy should be for healthcare practitioners to understand each patient individually and discuss their problems. Prof Osborne specifically advertised the utility of the Health Literacy Questionnaire (HLQ), which has successfully measured patient health literacy, and the OPHELIE methodology, which aims to optimise health literacy to improve health and equity.
Other sessions and topics EFA observed included discussions of assessing the impact of empowerment, social media’s impact on patient empowerment and community-based empowerment. These sessions shared outlooks on how ‘people-centred’ approaches to healthcare are vital, confirmed the measurement of empowerment as extremely complex and emphasised empowerment as a process. An increase in emphasis upon using technology to drive patient empowerment has been observed as unavoidable but technology cannot be seen more than being a tool and stakeholders will need to be very careful to avoid treating technology as a cure. In discussing the future of healthcare systems, it was proposed medical student education and healthcare professional training should be more inclusive of interactions with patients in addition to joint education modules for nurses and doctors.
EFA getting involved with the EMA training report available now!
As you might remember from the previous newsletter, on February 18 2014 EFA organised its first training for patient experts on allergy, asthma and COPD on getting involved in the important work that the European Medicines Agency (EMA) is doing through the process of evaluation, assessing and communication about medicines. To know more about the training and its outcomes, please read our freshly published report on that, including evaluation.
EUPATI training programme application deadline for patients is approaching
The European Patients’ Academy on Therapeutic Innovation (EUPATI) offers an expert training course for patients and patient representatives on medicines’ research and development process. The certificate course will be a mixture of online and face-to-face education modules over a 13-month period, starting in September 2014. Interested? Hurry up! The application period is open until April 20!
For more information & registration please visit: http://www.patientsacademy.eu/index.php/en/edu.
For the attention of patient advocates: EUPATI is looking for real-life stories from patient advocates who have been involved in medicines development processes, which can be used to educate fellow patient advocates. Share your experience until April 11: https://www.surveymonkey.com/s/eupati-experience.