This section provides details of opportunities that arise for patient participation across Europe. Please visit this page regularly or sign up to our LinkedIn group or the Facebook group to receive these updates as they arise.
Involvement in European Medicines Agency (EMA) activities
Summer Training for Young Patients Advocates
The European Patient’s Forum (EPF) is offering an opportunity for young people with a chronic long-term condition aged 18-30 to attend a summer training school for young patient advocates. The training is leadership programme aimed at contributing to building leadership capacities of young patients to get involved in patient organisations and advocacy work in their respective countries in a meaningful way.
The summer school takes place in Vienna, Austria on 3-5 July.
The deadline for applications is 3 February, 2017. Click here to find out more about the summer school, the eligibility criteria and how to apply.
Patient representatives wanted for stakeholder discussion
eTRIKS, an Innovative Medicines Initiative (IMI) project, is looking for 10-12 patient representatives to take part in an event that brings stakeholders together to discuss the value of research data. eTRIKS provides advice, open source platforms and training to translational research projects and wants to reduce the effort needed to integrate, explore and preserve your data.
Across Europe health researchers are collecting more and more information about diseases and treatments and how they impact individual patients. Often data is stored in incompatible, inaccessible systems that make it difficult or even impossible to reuse the information to improve patient outcomes. The challenges to using the data to their full value may be both practical and ethical.
Sharable, or standardised integratable data, is valuable data. In this form data is compatible with all other standardised forms of data, which then enables broader and richer analysis. The challenges that stop data becoming integrateable are the non-adoption of data standards, national legislation and organisational policy and a lack of understanding of the importance to share data.
eTRIKS is looking to inform medical researchers about the value of data and to provide practical advice on making data more valuable through ethical sharing. To do this they want to bring together patients, eTRIKS expertise and supported project representatives, to gain a broader insight into the value of data, data sharing and data reuse.
The event details are as follows:
Date: October 20th 2016
Venue: The European Parliament
Host: MEP/IMI/eTRIKS /BioSci Consulting
Stakeholder invitees: Patients, Patient Organisations, MEP’s, Funding bodies, Clinical Researchers, Data Managers or processors, policy makers
Facilitators: BioSci Consulting
Attendee details: 20-25 attendees plus 4 or 5 facilitators. Attendees by invite and application
Venue request: Room to seat 30 with sufficient space for discussion groups at table or in small clusters of 5 + facilitator
Timing: 2.5 hours session followed by networking space with refreshments, from 10.00-12.30 (CEST) with refreshments after
Catering: Light refreshments (Coffee/Tea/Juice/Sandwiches/Fruit at lunchtime, Coffee/Tea/Juice to start).
If you are interested please contact Kerstin.Morrison@europeanlung.org by 30 September 2016
Consumer reviewer required for a new Cochrane Overview
Physical activity and exercise for chronic pain in adults: an overview of Cochrane reviews
Cochrane requires the input of a Consumer Reviewer for their new overview, Physical activity and exercise for chronic pain in adults: an overview of Cochrane reviews. They will send a checklist and further information along with a copy of the overview to anyone interested. To register your interest click here.
There are vacancies for one/two reviewers.
UK opportunity for young people with JIA
This activity has been developed by Simon Stones from the University of Manchester, UK, to understand if an interactive activity helps young people with JIA, aged 16 to 25, to learn more about their condition, rather than information booklets or websites with lots of words. The activity will show the different types of JIA that exist, the treatments for young people with JIA, and some tips on how to be healthy, whilst living with JIA. Click here to find out more.
UK opportunity for children with cerebral palsy
The UCL is currently recruiting participants for our Functional Vision Screening Project, FunViS and Eye Pointing Classification, eyePoint. If you have received an information pack and would like to sign up your child for this project, please visit the Take Part page.
Patient reviewers for the BMJ
The British Medical Journal (BMJ) launched a new patient partnership strategy in 2014. As part of this, patients, carers and other patient advocates from across the Europe and the globe now act as patient reviewers of papers to help increase the relevance and usefulness of the research and comment papers the BMJ publishes.
The BMJ would like to invite you to join their database of patient reviewers. No expertise in scientific peer review is needed – it is the experience and insights of living with illness, chronic conditions and caring for and advocating for them which counts.