1. Demand articulation in emerging technologies Wouter Boon, Ellen Moors Athena Institute, VU University Amsterdam Third International Seville Conference on Future-Oriented Technology Analysis (FTA): Impacts and implications for policy and decision-making 16th- 17th October 2008

2. Demand articulation in emerging technologies Main conclusions Intermediary user organisations influence genomics innovation (translation) processes & debates, and vice versa Demand articulation processes are important learning processes about demands and underlying assumptions Intermediaries are loci of future-oriented technology assessment

3. Demand articulation in emerging technologies Demand articulation (1) A A A A A B Patient groups agenda Questions Needs Problems Ideas Expectations Promises ELSI concerns U/a Represented patients/members Other relevant parties

4. Demand articulation in emerging technologies Demand articulation (2) An iterative, inherently creative process in which stakeholders try to unravel preferences for and address what they perceive as important characteristics of an emerging innovation Learning process: demands (1st order) and underlying assumptions (2nd order) Followed by event history analysis (Van de Ven et al) time 1 st order: demands 2 nd order: underlying assumptions

5. Demand articulation in emerging technologies Research question How to understand the demand articulation processes of patient groups in the context of emerging pharmaceutical technologies?

6. Demand articulation in emerging technologies Case 1: Dutch Breast Cancer Association BVN Improve care for breast cancer patients Topic: reimbursement of expensive intramural breast cancer drugs (Herceptin)

7. Demand articulation in emerging technologies Case 1: Dutch Breast Cancer Association BVN Problem: reimbursement expensive drugs in hospitals Lot of organised actors articulate demands (solutions) Added problem: Herceptin use (no approval; medical guidelines)

8. Demand articulation in emerging technologies Case 2: Dutch Neuromuscular Diseases Association VSN Welfare, communication patients, stimulating research Topic: Pompe disease

9. Demand articulation in emerging technologies Case 2: Dutch Neuromuscular Diseases Association VSN 1995-2000: debates on use animals for drug production 2000: phase I/II involvement 2001-2002: compassionate use 2004: late-onset Pompe trials 2005-2006: reimbursement 2007: newborn screening

10. Demand articulation in emerging technologies Findings (1) 1 st order learning loop agenda synthesis expression evaluation 2 nd order learning loop self- position other- position Intermediary user organisation B B B A A A A A Examples: Expectations about specific emerging technologies Building science for Duchenne Dealing with alternative medicine and animal biotechnology Setting up clinical trials Reimbursement Compassionate use Concretise extent of problem of reimbursement Calls for action Examples: How to deal with emerging technology, How to manage expectations, and why? Setting-up activities Constant and also articulated because it wanted to copy the approach to other disease areas About dealing with R&D stimulation and steering; clinical trials; and policy regarding non-innovative drugs About balancing representation of patients About how to advocate 2 nd -order learning on objectives, values, frames and strategies indicates the development/maturing/periodisation of intermediaries

11. Demand articulation in emerging technologies Findings (2) 1 st order learning loop agenda synthesis expression evaluation 2 nd order learning loop self- position other- position Intermediary user organisation B B B A A A A A Demand articulation mechanisms: - Management of expectations - Knee-jerk reaction - Proactive network building - Pro/reactive case building

12. Demand articulation in emerging technologies Findings (3) 1 st order learning loop agenda synthesis expression evaluation 2 nd order learning loop self- position other- position Intermediary user organisation B B B A A A A A Two categories: - Silent majority - Patient champions

13. Demand articulation in emerging technologies Findings (4) 1 st order learning loop agenda synthesis expression evaluation 2 nd order learning loop self- position other- position Intermediary user organisation B B B A A A A A Interface strategies: - Access - Empowerment - Impact Examples: - Representation - Sudden anxiety Examples: - Unasked advocacy - Forceful advocacy - Alignment of actors

14. Demand articulation in emerging technologies Findings (5) 1 st order learning loop agenda synthesis expression evaluation 2 nd order learning loop self- position other- position Intermediary user organisation B B B A A A A A weighingorganisation feedback legitimise

15. Demand articulation in emerging technologies Organising demand articulation (1) Results from a workshop Workshop objective: create strategy how intermediary deal with steering pharmaceutical R&D Dutch federation of cancer patient organisations (NFK) Intermediaries as loci of future-oriented technology assessment?

16. Demand articulation in emerging technologies Organising demand articulation (2) Results from a workshop

17. Demand articulation in emerging technologies Identification of a list of important barriers and opportunities to involvement Recommendations of how to organise involvement, e.g.: – Professionalise, proactivity (active case building demand articulation mechanism) – Representation of members (advocate personal needs and anticipative alignment interface strategies) – Catalyst and form platform between actors (urging for action and network building demand articulation mechanisms) – Careful positioning (tentative interface strategies and considered self-positioning) In line with demand articulation mechanisms and interface strategies found in cases can be used to change intermediaries as loci of FTA Organising demand articulation (3) Results from a workshop

18. Demand articulation in emerging technologies Conclusions (1) Intermediary user organisations influence genomics innovation (translation) processes & debates, and vice versa Demand articulation processes are important learning processes about demands and underlying assumptions Intermediaries are loci of future-oriented technology assessment

19. Demand articulation in emerging technologies Conclusions (2) Three dilemmas: Positioning Representation Need to be proactive If overcome, intermediary user organisations can play central and crucial role

20. Demand articulation in emerging technologies Thank you for your attention! Questions and discussion wouter.boon@falw.vu.nl