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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

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


Demand articulation in emerging technologies

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 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


Demand articulation in emerging technologies

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


Demand articulation in emerging technologies

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

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

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

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

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

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


Demand articulation in emerging technologies

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


Demand articulation in emerging technologies

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


Demand articulation in emerging technologies

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


Demand articulation in emerging technologies

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


Demand articulation in emerging technologies

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

Demand articulation in emerging technologies

Organising demand articulation (2)

Results from a workshop


Demand articulation in emerging technologies

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


Demand articulation in emerging technologies

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

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

Demand articulation in emerging technologies

Thank you for your attention!

Questions and discussion

[email protected]


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