The conference is part of the ‘European Patient Organisations in Knowledge Society’ (EPOKS) project funded by the European Commission’s FP7 'Science in society' initiative. EPOKS has been involved in mapping the history and contemporary configuration of patient organisations (POs) in Europe, with a focus on engagement with research. Activism has been studied in four health arenas - Childbirth, Attention Deficit Hyperactivity Disorder, Alzheimer's Disease, and Rare Diseases - across four countries, France, UK, Ireland and Portugal.

Alongside presentations of the EPOKS findings, the conference will include participation from patient organisations, policy makers and leading academics in the field of health activism. The conference programme comprises:
∆ Plenary sessions: researchers involved in the project will present the EPOKS findings.
∆ Workshops: the aim is to foster dialogue between the academic and non-academic participants at the conference about the successes and challenges facing patient organisations, and to produce recommendations for the European Commission detailing what is needed for patient organisations to move forward with their important work.

Wednesday 14 September 
Conference opening   
Venue: Lancaster Town Hall

18h00-19h30 | Public Lecture
Professor Stuart Blume
Innovia Foundation on Medicine Technology and Society and University of Amsterdam
 
Drinks reception
 

Thursday 15 September 
Venue: FASS building, Lancaster University

9h30-10h00 | General introduction to EPOKS project
Madeleine Akrich, Coordinator of the EPOKS Project, Centre de sociologie de l’innovation,CNRS-Mines ParisTech, France
Aims of the conference
Celia Roberts and Imogen Tyler, Sociology Department, Lancaster University, UK

Session 1. Valuing patients’ experience: telling stories and producing figures.
How do POs deploy experiential knowledge and make it legitimate and valuable? How do they create and use statistics? How do they consult with and represent members’ experiences? How are these used in research?

10h00-10h30 | Presentation of EPOKS findings
Celia Roberts, Sociology Department, Lancaster University, UK
João Arriscado Nunes, Centre for Social Studies, University of Coimbra, Portugal
 
10h30-11h45 | Workshops

11h45-12h00 | Break

12h00-12h30 | Report back – Discussants

12h30-13h30 | Lunch

Session 2. Engaging with evidence-based medicine and evidence-based policy
What kind of resource do EB medicine and policy represent for POs? How do POs add value to these? What does the prioritisation of EB medicine and policy mean for the way POs do knowledge work? How do POs engage in research?

13h30-14h00 | Presentation of EPOKS findings
Madeleine Akrich, Centre de sociologie de l’innovation, CNRS-MinesParisTech, France
Tiago Moreira, School of Applied Social Sciences, Faculty of Social Sciences and Health, Durham University, UK

14h00-15h30 | Workshops

15h30-16h00 | Report back – Discussants

Friday 16 September 
Venue: FASS building, Lancaster University

Session 3. Engaging in cross-national exchange
How do POs develop common actions / knowledges? How can POs learn from other countries? Do they use information from other countries? Do European POs coalition-building and lobbying in Europe foster the emergence and spreading of a European research model?

9h30-10h00 | Presentation of EPOKS findings
Orla O’Donovan, Department of Applied Social Studies, University College Cork, Ireland
Vololona Rabeharisoa, Centre de sociologie de l’innovation, CNRS-MinesParisTech, France

10h00-11h30 | Workshops

11h30-12h00 | Coffee break

12h00-13h00 | Report back from workshop, conference outcomes and recommendations: Collecting together suggestions and prioritising these.

13h00 -14h00 | Lunch – End of the conference

For more information, and to register for the conference please visit:
http://www.csi.ensmp.fr/WebCSI/EPOKSWebSite/
http://www.lancs.ac.uk/fass/sociology/event/3668/


Organization: EPOKS Project/European Patient Organizations in Knowledge Society