Health Activism in Europe Today

Date: 14-16 September 2011 Time: 6 pm

Venue: Lancaster Town Hall and Lancaster University

EPOKS Project Conference

The conference is part of the 'European Patient Organisations in Knowledge Society' project (EPOKS) 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 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.

What are the aims of the conference?

'Health Activism in Europe Today' is a participative conference. Its aim is to present the preliminary findings of the EPOKS project so as to open discussion with representatives from patient organisations working at national and European policy levels, policy makers and academics interested in these issues. The objective is to present the work of the teams participating in the project in the four health arenas, alongside the experience knowledge of key actors in these arenas.

There is much to be learned from the exchanges between participants from various backgrounds - activist, academic, or relating to a specific health condition and/or country. Further, the discussions will be written up and, along with project results, presented to the European Commission. Documents will be disseminated with open access.

There will be an opportunity for participating organisations to display and disseminate materials. Informal settings (meals and wine reception) are also intended to foster the exchange of experiences, practices and priorities for the future.

What is the structure of the workshop?

The conference will start on the evening of Wednesday 14th September, with a public lecture delivered by Professor Stuart Blume in Lancaster Town Hall. Stuart has a long history of working in Deaf activism and in the social scientific study of health politics in several European universities and with the Innovia Foundation. His lecture will provide an overview to the key issues facing health activism in Europe today. There will be a wine reception following this lecture.

The participative part of the conference starts on Thursday morning (15th Sept) and ends on Friday lunchtime (16th Sept). It will be held at Lancaster University. During this day and a half, we will focus on three key themes:

Valuing patients' experiences: telling stories and producing figures
Engaging with evidence-based medicine and evidence-based policy
Cross national exchanges and coalitions.

Members of the EPOKS teams will introduce each theme, presenting preliminary findings from our research. We will then move into facilitated workshops to discuss your responses and experiences relating to these themes. The final session will be a general discussion of the overall issues arising and what we would all like to feed back to the European Commission.

(See below for draft programme)

How much will it cost?

The workshop is free to invitees, and includes wine reception and nibbles on Wednesday evening, lunch on both Thursday and Friday and a buffet dinner on Thursday evening. For some participants we have a limited number of rooms booked at a newly opened 'Travelodge' hotel in Lancaster city centre. Subsidies are available for those needing assistance with travel or accommodation costs (please email us about this).

Lancaster is a small historic city in the Northwest of England, approximately 1 hour by train from Manchester airport and 2.5 hours by train from London (Euston Station). More travel information can be found on the Lancaster University website. Lancaster is very close to the Lake District and to the Yorkshire Dales.

What do I need to do to register?

To register your interest in attending, please follow the link: https://online-payments.lancaster-university.co.uk/browse/extra_info.asp?modid=1&prodid=740&deptid=6&compid=1&prodvarid=0&catid=121

or email Candice Satchwell on c.satchwell@lancaster.ac.uk before June 1st 2011.

Draft Programme

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

18:00-19.30 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

9.30-10.00 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?

10.00-10.30 Presentation of EPOKS findings

Celia Roberts, Sociology Department, Lancaster University, UK

Joao Arriscado Nunes, Centre for Social Studies, University of Coimbra, Portugal

10.30- 11.45 Workshops

11:45-12:00 Break

12.00-12.30 Report back - Discussants

12.30-13.30 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?

13.30-14.00 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

14.00-15.30 Workshops

15.30-16:00 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?

9.30-10.00 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

10-00-11.30 Workshops

11.30- 12:00 Report back - Discussants

12.00-13.00 Collecting together suggestions and prioritising these for presentation to the European Commission

13.00 - 14.00 Lunch - End of the conference.

Accommodation suggestions

Suggested hotels in Lancaster:

Travelodge Lancaster Central Hotel

King Street, Lancaster, LA1 1RE

Tel: 0845 984 8484