SCIENCE-SOCIETY DIALOGUE ON INNOVATIONS: INTERACTIVE LEARNING AND ACTION APPROACH

SCIENCE-SOCIETY DIALOGUE ON INNOVATIONS: INTERACTIVE LEARNING AND ACTION APPROACH JACQUELINE BROERSE ATHENA, VU UNIVERSITY AMSTERDAM

5TH LIVING KNOWLEDGE CONFERENCE

BONN, 10-12 MAY 2012

CONTENTS

• What is a science-society dialogue? • Why a science-society dialogue? • How to shape such a dialogue: The Interactive Learning and Action approach > An example: research agenda burns • Challenges

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Faculteit der Aard- en Levenswetenschappen

WHAT IS SCIENCE-SOCIETY DIALOGUE Top-down Four types of science communication dissemination

One-way

Transmission

Transaction

Feedback Active receiver

Two-way

Public Public Influence the publicawareness understanding Public Public Influence science participation engagement

Source: based on Waarlo, 2007

Consultation

Dialogue Partnership Joint decision making

WHY SCIENCE-SOCIETY DIALOGUE Win-win situation for both science and society •

Gains for Science: More enriched, contextualized science > Improved research utilization > More support for science >

•

Gains for Society: Better innovations > Increased empowerment >

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HOW SCIENCE-SOCIETY DIALOGUE

Important research question:  what method works best when and how given specific objectives

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INTRACTIVE LEARNING AND ACTION APPROACH • Approach to shape science-society dialogue • ILA approach is developed over period of 15 years (‘85); through design research we – Developed ‘prototype’ based on literature – Tested this through social experiments – Made a monitoring & evaluation framework – And reflected on and adapted the model • Focus initially on research agenda setting and policy development 6


INTRACTIVE LEARNING AND ACTION: PRINCIPLES

• Multi-stakeholder participation – Active engagement of relevant stakeholders – On equal footing – Early in research process – With influence on decision making – Specific attention for diversity and plurality • Explicit integration of experiential knowledge – Visible and recognizable for participants

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INTRACTIVE LEARNING AND ACTION: PRINCIPLES

• Knowledge co-creation between science and society through mutual learning between stakeholders – Actors listen respectfully to each other – Are willing to revise their point of view – Substantive, procedural and reflexive • Structured and facilitated process with emergent design

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INTERACTIVE LEARNING AND ACTION: GUIDELINES Phased process 1. 2.

Preparation and exploration In-depth study: Consultation & Opinion a. assessing problem framings development b. identifying research options/solutions of different stakeholders separately 3. Integration of different perspectives Dialogue 4. Agenda setting and action planning 5. Implementation of program – learning cycles Iterative and flexible – not chronological blue print 9


INTERACTIVE LEARNING AND ACTION: METHODS Dissemination

Receiver oriented

Consultation

Dialogue

Presentation Conference Leaflet Educational material Journal article Book

Theater Science centre Science festival Open day Workshop Computer tailoring

Interview Questionnaire Citizen panel Citizen jury Consensus conference Focus group Public hearing Delphi

Round table workshop Scenario workshop Design workshop Story workshop Joint committee Socratic meeting Dialogue meeting

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INTERACTIVE LEARNING AND ACTION: TOOLS IN GROUPS Exercises

Visualizations

Issue inventory: Stakeholder map Pop corn Body map Write & shift exercise Mind map Clustering & labeling Problem tree Dynamic learning agenda Etc. Realize focus: SWOT analysis Agenda setting Ranking tables Value attribute analysis Planning: Vision assessment Transparency, validity, Backcasting

reproducibility 11


INTERACTIVE LEARNING AND ACTION: CASES • Agenda setting in agricultural research >

Zimbabwe, South Africa, Bangladesh, The Netherlands

• Agenda setting in health research > > >

Charity funds: Asthma and COPD, Diabetes, Burns, Congenital heart disease, Bipolar disease, Dementia Netherlands Organization for Health Research and Development: Mental disability, Health Technology Assessment Preventive medicine (Vietnam)

• Agenda setting in emerging science Genomics (soil ecology, food crops) > Cognitive and neurosciences (neurogenomics and neuro-imaging) > Synthetic biology >

• Health policy development Ministry of Health: Medical biotechnology, Rational drug use, Medical devices, Drugs use > National Health Council: Medical biotechnology, Medical products, Lyme’s disease >

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Example

The case of the Dutch Burns Foundation BhURN project

Set up of project Phases: 1. Preparation: exploration of relevant issues literature study and interviews

2. Consultation: priority lists per actor group (scientists, burn survivors, health professionals) focus groups, questionnaire, interviews and Delphi round 3. Integration: broadly supported priority list dialogue meeting  advisory report to DBF 4. Programming: advise as input for development research program 2007-2011

Priority list burn survivors Literature & interviews

37 participants

Focus groups (5 groups)

Feedback meeting (2 groups) Questionnaire

(912

Feedback meeting 15 topics

224)

impact op (kwaliteit van) leven

Problem tree

Werk- en financiele problemen

psychosociale problemen

beperking in lichamelijke/ dagelijkse activiteit

impact op gezin

psychosociale problemen broers/zussen

psychosociale problemen kind met brandwonden

Psychosociale en fysieke belasting ouders

slaapproblemen

ontevredenheid over brandwondenzorg

impact op relatie

psychosociale problemen partner

problemen met intimiteit

herbeleving

stuwing op donorplaatsen

schuldgevoel bij omstander

bewegingsbeperking

problemen met zelfbeeld

verergering van brandwonden/ littekens

problemen met (patienten)recht

terugkerende operaties

verbrand kind is middelpunt van gezin

buiten de maatschappij geplaatst zijn

Jeuk

problemen met schade/zorgverzekeringen

‘gat’ in nazorg

slechte zorgverlening in ziekenhuis

vervelende reacties uit de omgeving

schaamte

tekort lichamelijk nazorgverlening pijn

lichamelijke problemen in de acute fase

problemen met drukpakken

(hypertrofische) littekens

wondinfectie

ademhalingsproblemen

verbandwisselingen

tekort psychosociale hulpverlening

problemen met verpleging in ziekenhuis/bwc

littekenverkleving

slechte kwaliteit van de huid

Ondeskundige EHBO/diagnose

onwetendheid hoe te handelen na ziekenhuis

verkeerd aangemeten schoenen/ drukpakken

verstoorde arts-patient relatie

problematische omgang arts met medicijnen

onwetendheid over psychosociale nazorg en lichamelijke nabehandeling

slechte lichamelijke nazorg

tekort thuiszorg en hulpverlening

psychosociale zorg niet ‘op maat’

Door ontreddering: drempel om info op te nemen brandwonden

Confrontatie Met brandwonden

gaten in de wetenschappelijke kennis

taboe op suicide Verbrandingsongeval

geen ruimte in brandwondencentrum beverwijk

onwetendheid van de omgeving

ondeskundige (huis-/revalidatie)artsen en ambulancepersoneel

tekort informatievoorziening

tekort begeleiding bij procedures

drempel om naar ziekenhuis te gaan met vragen

thuis-/nazorgpersoneel niet gespecialiseerd

tegenstrijdige werkwijzen brandwondencentra

onderschatting nazorgprobleem door zorgverleners

gebrek aan patiënten empowerment

Gebrek aanbod en coördinatie psychosociale zorg

beperkte bemanning (ook psych. hulp) in ziekenhuis

Questionnaire Part I: general characteristics Part II: prioritize research topics and themes Part III: evaluative questions

• 10 themes  top 4 • Each theme comprises 6 topics (60 total)  per theme top 3 D

F C

Based on literature, focus groups and feedback meetings

Priority lists professionals Policy plan VSBN (2004-2008)

Interviews & 3 meetings (20 participants)

Psycho-social and rehabilitation Basic research Prevention

Delphi round 10 topics 11 topics 5 topics

Basic research scar

inflammatory reaction

infection

absence of instrument for measuring scars

secondary damage tissue damage

normal immunity affected

Burns

antibiotics resistance


Burn survivors

Werk- en financiele problemen



impact op gezin




slaapproblemen


impact op relatie



herbeleving



bewegingsbeperking







Jeuk


‘gat’ in nazorg



schaamte





wondinfectie


verbandwisselingen



littekenverkleving




























Integration Werk- en financiele problemen



impact op gezin




slaapproblemen


impact op relatie



herbeleving



bewegingsbeperking







Jeuk


‘gat’ in nazorg



schaamte





wondinfectie


verbandwisselingen



littekenverkleving



























Interim conclusions

• Topics mentioned by burn survivors are broad  only lack of attention for prevention • Topics of professionals give more detailed ‘picture’ of part of topics mentioned by burn survivors  Good starting point for dialogue meeting

Dialogue meeting • 30 participants: 15 people with burns and 15 professionals • Discussion of 4 priority lists (differences, similarities, ‘blind spots’) • Integration into one list with 7 themes and 41 research topics • Prioritization of integrated list – 7 themes placed in order – selection of top 15 of research topics

End score

Epidemiological data on burn accidents

Influence of stretch on scar development of contractures Itching & oedema on Mechanisms for wound healing and scar scars / donor spots development

topic in top 15

Quality of psychic and social care Psycho-social aspects of having scars Innovative research on wound healing

Strategies for intervening in process of infection/inflammation

Impact of burn accident on family life

Professionals Burn survivors

Impact •

Impact on research agenda DBF: – Part of the agenda overlapped with current priorities – New topics: • Itching on scars and donor places • Psycho-social aspects and care • Prevention – epidemiological data

• Impact on patient organization – Increased interest in research – More contact with Burns Foundation – Feelings of empowerment – Start of a buddy system

Conclusion • Broadly supported research agenda for burns • Patients were able to set research priorities – Attention for long-term and short-term research – Input of new research topic (itching and oedema) – Visible in agenda  satisfaction high • Each stakeholder group had ‘own’ priorities, but groups also prioritized each others topics  mutual learning • Clear impact on charity fund and patient organization

CHALLENGES IN SCIENCE-SOCIEY DIALOGUE • Current ways of thinking and acting among stakeholders – Science: reductionism, autonomy, publish or perish and lack of competences in transdisciplinary research – Public: idea of scientific citizen – Hierarchical relations: danger of tokenism

• Adherence to scientific quality criteria (transparency, validity, reproducibility) versus quick results • It takes time and costs money (funding) • Sustaining science-society interactions beyond project • Lack of knowledge exchange – reinventing the wheel

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SOME RELEVANT PUBLICATIONS • Biotechnology and food: Towards a societal agenda in 10 steps, de Cock Buning, Regeer and Bunders (2008) • Knowledge co-creation: Interaction between science and society, Regeer and Bunders (2009) • Involving burn survivors in agenda setting on burns research: an added value?, Broerse et al. (2010) Burns 28


THANK YOU QUESTIONS?

SCIENCE-SOCIETY DIALOGUE ON INNOVATIONS: INTERACTIVE LEARNING AND ACTION APPROACH

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