Welcome to Patvocates!
Well-informed patients and carers have a key role to play in the implementation of patient-centred prevention, treatment and care. Patient groups have a crucial role to play in supporting patients making their own choices, and are often forgotten as key stakeholders in society and healthcare. Patients need to sit at the table when health policy decisions are being made on their behalf. In science, they have unique knowledge and experience which can improve research.
This open-access website Patvocates.net (PATient adVOCATES), run by patient advocates, aims to provide a platform of collaborative knowledge about patient empowerment. It provides an open-access Wiki with information and resources on the following topics:
- Patient Support Wiki: The daily support work that patient groups deliver to patient
- Patient Advocacy Wiki: Patient empowerement through a strong patients' voice
- Patients in Research Wiki: The patients' contribution to collaborative clinical research
Patvocates, the CML Advocates Network and LeukaNET e.V. have conducted a number of projects to make Informed Consent documents more readable and understandable.
Here are some useful resources on our projects on "Informed Consent", e.g. a presentation held at the EFGCP Annual Conference 2014 (English), an English-language poster on the project, as well as links to the (German) informed consent documents we created and which are in use in clinical trials more than 100 clinical centers today.
Last Updated on Monday, 27 July 2015 07:29
"PATIENT ADVOCATES IN, NOT OUT" was signposted by patient advocates at the #ESMO14 conference, given EU and Spanish regulation and its interpretation did not allow patient advocates to enter the satellite symposia and exhibition of the conference. This repeated the situation at the European Cancer Congress in 2013 in Amsterdam, and is likely to happen again in the future.
Leading European patient advocates world-wide as well as ESMO representatives demonstrate their disagreement with this anachronistic policy that needs to be changed by posting "Patient Advocates IN NOT OUT" selfies.
The #AdvocatesIN initiative has since spread wider than just on the topic of access to conferences. See the #AdvocatesIN material, photos of advocates etc here: http://www.patvocates.net/advocatesin
EFGCP 2014 Annual Conference 2014: Harms and Benefits in Health Research: The patients' perspective (Jan Geissler)
Last Updated on Monday, 24 November 2014 15:48
IMI-funded 'European Patients Academy on Therapeutic Innovation' aims to educate patient advocates and lay public about therapeutic innovation
Last Updated on Thursday, 29 March 2012 22:50
The Innovative Medicines Initiative (IMI), a public private partnership between the European Commission and EFPIA, will fund a patient-led consortium to develop the 'European Patients' Academy on Therapeutic Innovation' (EUPATI). From 2012, the academy will educate patient representatives and the lay public on personalised and predictive medicine, design and conduct of clinical trials, drug safety and risk/benefit assessment, pharmaco-economics as well as patient involvement in drug development. EUPATI will provide educational material in seven European languages targeting eleven European countries. See the Patients' Academy website for more information.