Demand articulation in emerging technologies Wouter Boon, Ellen Moors Athena Institute, VU...

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

wouter.boon@falw.vu.nl