Demand articulation in emerging technologies
Wouter Boon, Ellen Moors
Athena Institute, VU University Amsterdam
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
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
Demand articulation in emerging technologies
Demand articulation (1)
A
A
A
A
A BPatient groups
agenda
QuestionsNeedsProblemsIdeasExpectationsPromisesELSI concerns
U/a
Represented patients/members Other relevant parties
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
1st order: demands
2nd order: underlying assumptions
Demand articulation in emerging technologies
Research question
• How to understand the demand articulation processes of patient groups in the context of emerging pharmaceutical technologies?
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)
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)
Demand articulation in emerging technologies
Case 2: Dutch Neuromuscular Diseases Association VSN
• “Welfare, communication patients, stimulating research”
•Topic: Pompe disease
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
Demand articulation in emerging technologies
Findings (1)
1st order learning loopagenda
synthesis
expression
evaluation
2nd order learning loop
self-position
other-position
Intermediary user organisation
B
B
B
A
A
AA
AExamples: Expectations about specific emerging technologiesBuilding science for DuchenneDealing with alternative medicine and animal biotechnology Setting up clinical trialsReimbursementCompassionate useConcretise extent of problem of reimbursementCalls for action
Examples: How to deal with emerging technology, How to manage expectations, and why?Setting-up activitiesConstant and also articulated because it wanted to ‘copy’ the approach to other disease areasAbout dealing with R&D stimulation and steering; clinical trials; and policy regarding non-innovative drugs About balancing representation of patientsAbout how to advocate
2nd-order learning on objectives, values, frames and strategies
indicates the development/‘maturing’/periodisation
of intermediaries
Demand articulation in emerging technologies
Findings (2)
1st order learning loopagenda
synthesis
expression
evaluation
2nd order learning loop
self-position
other-position
Intermediary user organisation
B
B
B
A
A
AA
A
Demand articulation mechanisms:- Management of expectations- Knee-jerk reaction- Proactive network building- Pro/reactive case building
Demand articulation in emerging technologies
Findings (3)
1st order learning loopagenda
synthesis
expression
evaluation
2nd order learning loop
self-position
other-position
Intermediary user organisation
B
B
B
A
A
AA
A
Two categories:- Silent majority- Patient champions
Demand articulation in emerging technologies
Findings (4)
1st order learning loopagenda
synthesis
expression
evaluation
2nd order learning loop
self-position
other-position
Intermediary user organisation
B
B
B
A
A
AA
A
Interface strategies:- Access- Empowerment- Impact
Examples:- Representation- Sudden anxiety
Examples:- Unasked advocacy- Forceful advocacy- Alignment of actors
Demand articulation in emerging technologies
Findings (5)
1st order learning loopagenda
synthesis
expression
evaluation
2nd order learning loop
self-position
other-position
Intermediary user organisation
B
B
B
A
A
AA
A
weighing organisation
feedback
legitimise
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?
Demand articulation in emerging technologies
Organising demand articulation (2)
Results from a workshop
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
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
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
Demand articulation in emerging technologies
Thank you for your attention!Questions and discussion