We closed the year with the first partners' assembly of the Patient Access Partnership and with the launch of the Data Protection campaign, run jointly with various stakeholders.
Up and running patient-led partnership on access
Our major focus on health inequalities led us, with our Bulgarian member, the National Patient Organisation (NPO), to set up the Patient Access Partnership.
It consists of a patient-led multi-stakeholder partnership that will look for innovative solutions to reduce inequities in access to quality healthcare in Europe.
The inaugural Partners’ Assembly meeting took place in December. The participants identified three work streams to embark on the pilot platform: they will first map existing practices and indicators of access to help develop a measurement tool which is the second step that will set standards of quality access to healthcare. This concrete deliverable will in turn inform the Platform’s last phase towards shaping the national and European agenda on access.
On 27 January 2015 there will be the launch of the Interest Group on Access to healthcare in the European Parliament. This Group led by Andrey Kovatchev (ALDE, Bulgaria) (link to blog article) will play a bridging role between the multi-stakeholder platform and the European Parliament.
Patient to share health data for research
EPF has joined the ‘European Data in Health Research Alliance’ that was officially set up in December. This alliance brings together academic, patient and research organisations from across Europe to ensure decision-makers understand the importance of having data protections rules that facilitate research. In addition it will demonstrate that patients and researchers have the same concerns and are united on this question.
We, as patients, are increasingly aware of the value and importance of sharing our data. From our perspective, use of health and genetic data is vital to advancing health research – this includes public health research, medical research and social science research (including psycho-social research). Therefore ensuring we strike the right balance on the research and consent provisions is essential to us.
In March 22014 the European Parliament adopted a first reading position for stricter rules on consent for research. If implemented, this Regulation would harm health research by creating an obligation to seek specific consent when personal data is used (link to more information).