Stakeholder participation in health research agenda setting: the case of asthma and COPD research in the Netherlands

Current methodologies for stakeholder participation in research agenda setting often fall short of effectiveness in terms of ensuring shareholders' influence. This article reports on a newly developed participation methodology, which was applied in an interactive agenda-setting project concerning research on asthma and coronary obstructive pulmonary disease. The effectiveness of this methodology was evaluated on both the participation process and its outcomes. The results suggest that the methodology used is rather effective with respect to the legitimacy and rationality of the process, the quality of the outcomes and the achievement of mutual learning. Copyright , Beech Tree Publishing.

[1]  Jacqueline E. W. Broerse,et al.  Patient Partnership in Decision-Making on Biomedical Research , 2007 .

[2]  J. Bunders,et al.  Patients’ priorities concerning health research: the case of asthma and COPD research in the Netherlands , 2005, Health expectations : an international journal of public participation in health care and health policy.

[3]  J. F. Caron-Flinterman,et al.  The experiential knowledge of patients: a new resource for biomedical research? , 2005, Social science & medicine.

[4]  G. Rowe,et al.  Evaluating Public-Participation Exercises: A Research Agenda , 2004 .

[5]  J. Boote,et al.  What does it mean to involve consumers successfully in NHS research? A consensus study , 2004, Health expectations : an international journal of public participation in health care and health policy.

[6]  J Gabbay,et al.  Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. , 2004, Health technology assessment.

[7]  J. Allsop,et al.  Influencing the national policy process: the role of health consumer groups , 2004, Health expectations : an international journal of public participation in health care and health policy.

[8]  Renée A. Irvin,et al.  Citizen Participation in Decision Making: Is It Worth the effort? , 2004 .

[9]  Jacqueline E. W. Broerse,et al.  Programmering wetenschappelijk onderzoek astma en COPD 2005-2008: " Maatschappelijke agenda". , 2004 .

[10]  Kathleen E. Halvorsen,et al.  Assessing the Effects of Public Participation , 2003 .

[11]  J. Eyles,et al.  Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. , 2003, Social science & medicine.

[12]  Sheila Jasanoff,et al.  Breaking the Waves in Science Studies , 2003 .

[13]  L. Scott,et al.  An evaluation of consumer participation in hospital breast services , 2003 .

[14]  M. Crawford,et al.  Systematic review of involving patients in the planning and development of health care , 2002, BMJ : British Medical Journal.

[15]  J. Boote,et al.  Consumer involvement in health research: a review and research agenda. , 2002, Health policy.

[16]  J. Boote,et al.  Consumer involvement in health research : Fact or fiction? , 2002 .

[17]  Seth Tuler,et al.  Unlocking the Puzzle of Public Participation , 2002 .

[18]  C. Williamson,et al.  What does involving consumers in research mean? , 2001, QJM : monthly journal of the Association of Physicians.

[19]  Jacqueline E. W. Broerse,et al.  Transdisciplinarity: The New Challenge for Biomedical Research , 2001 .

[20]  M Eccles,et al.  Involvement of consumers in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development programme , 2001, Quality in health care : QHC.

[21]  Karen Bickerstaff,et al.  Participatory Local Governance and Transport Planning , 2001 .

[22]  Pieter Glasbergen,et al.  Interactive policy-making - a model of management for public works , 2001, Eur. J. Oper. Res..

[23]  A. Irwin.  Constructing the scientific citizen: Science and democracy in the biosciences , 2001 .

[24]  David M. Konisky,et al.  Values, Conflict, and Trust in Participatory Environmental Planning , 2000 .

[25]  G. Rowe,et al.  Public Participation Methods: A Framework for Evaluation , 2000 .

[26]  Jacqueline E. W. Broerse,et al.  Requirements for biotechnology development: the necessity for an interactive and participatory innovation process , 2000 .

[27]  David H. Guston,et al.  Evaluating the First U.S. Consensus Conference: The Impact of the Citizens’ Panel on Telecommunications and the Future of Democracy , 1999 .

[28]  Jacqueline E. W. Broerse,et al.  Pitfalls in implementation of integral design approaches to innovation: The case of the Dutch Special Program on Biotechnology , 1999 .

[29]  Ann Waters-Bayer,et al.  Developing technology with farmers : a trainer's guide , 1998 .

[30]  T. Webler,et al.  Fairness and Competence in Citizen Participation , 2000 .

[31]  Ortwin Renn,et al.  A Brief Primer on Participation: Philosophy and Practice , 1995 .

[32]  M. Brommels,et al.  Health care reform in The Netherlands, Sweden, and the United Kingdom. , 1994, Health affairs.

[33]  Ortwin Renn,et al.  Public participation in decision making: A three-step procedure , 1993, Policy Sciences.

[34]  Frank N. Laird,et al.  Participatory Analysis, Democracy, and Technological Decision Making , 1993 .

[35]  Daniel J. Fiorino.  Citizen Participation and Environmental Risk: A Survey of Institutional Mechanisms , 1990 .