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Demand articulation in emerging technologies

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

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Demand articulation in emerging technologies

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

  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 Questions Needs Problems Ideas Expectations Promises ELSI concerns A Patient groups B A agenda U/a A Other relevant parties Represented patients/members

  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) 1st order: demands 2nd order: underlying assumptions time

  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) Intermediary user organisation 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 2nd order learning loop self- position other- position 2nd-order learning on objectives, values, frames and strategies indicates the development/‘maturing’/periodisation of intermediaries B A A synthesis 1st order learning loop A B 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 A agenda expression B A evaluation

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

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

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

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

  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 Organising demand articulation (3) Results from a workshop • 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

  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

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