Patient involvement in health research is getting
more accepted over the years. Until recently scientists and medical
professionals were the sole assessors of quality and relevance of research
proposals. In the Netherlands, as in other European and North American
countries, emancipatory, political and democratic developments stimulated the
emergence of patient involvement as a new “voice” in the appraisal of
research. A time-series cross sectional longi-tudinal case study was used to
describe and analyse a seven year period since the introduction of the
patients’ perspective in the Long-fonds research cycle. Longfonds, the Lung
Foundation in the Netherlands (LFN) was formerly called “Astma Fonds”. The
study was conducted using an actors-interaction model against the background of
the dynamics in society. The introduction of patient involvement resulted in a
paradigm shift. The scientific and societal relevance of research proposals are
now being reviewed by all parties in a more ef- fective and efficient way.
Patients, now involved in the review procedure of research funding, are trained
and equipped with an appraisal tool for societal relevance from a patients
perspective. Scientific relevance and societal relevance are evaluated
separately and balanced in the re- search funding application approval process.
Societal relevance is being evaluated by a pa- tient advocates group. The results show how a government initiative
and an approach by a patient organisation have led to more patient involvement
in lung research. It requires “believers” both to initiate and continue the
work and to promote the lessons learned inside and outside the patient
organisation. As this depends on devoted individuals, the continuity of
patient involvement remains vulnerable. This seven year study offers valuable insight in patient
involvement against the background of the changeing health discourse.
Cite this paper
Teunissen, G. , Visse, M. , Laan, D. , de Boer, W. , Rutgers, M. and Abma, T. (2013) Patient involvement in lung foundation research: A seven year longitudinal case study. Health
, 320-330. doi: 10.4236/health.2013.52A043
 WHO (2011) World report on disability, WHO/NMH/ 11.01, Geneva.
 Astma Fonds (2012) Handleiding vooraanmeling onderzoek. Astmafonds 2012.
 Yin, R.K., Green, J.L., Camilli, G. and Elmore, P.B. (2006) Handbook of complementary methods in education research. Lawrence Erlbaum Associates Publishers, Mahwah, xxix, 863 Pages.
 Yin, R.K. (1994) Case study research: Design and methods. Thousand Oaks.
 Eisenhardt, K.M. (1991) Better stories and better constructs: The case for rigor and comparative logic. Academy of Management Review, 16, 620-627.
 Eisenhardt, K.M. (1989) Building theories from case study research. The Academy of Management Review, 14, 532-550.
 Kohn, L.T. (1997) Methods in case study analysis. The Center for Studying Health System Change. Technical Publication No. 2, June 1997 (Based on Panel Discussion Conducted at the 1996 Meeting of the Association for Health Services Research).
 Pettigrew, A.M. (1990) Longitudinal field research on change: Theory and practice. Organization Science, 1, 267- 292. doi:10.1287/orsc.1.3.267
 Stein, T., Frankel, R.M. and Krupat, E. (2005) Enhancing clinician communication skills in a large healthcare organization: A longitudinal case study. Patient Education and Counseling, 58, 4-12.
 Bowen, G.A. (2006) Grounded theory and sensitizing concepts. International Journal of Qualitative Methods, 5 Article 2.
 WMA—World Medical Association (2008) Declaration of helsinki. Seoul.
 Devers, K.J. (1999) How will we know “good” qualitative research when we see it? Beginning the dialogue in health services research. Health Services Research, 34, 1153-1188.
 van Bijsterveldt, M. and Dekker, E. (2006) Handboek pati?ntenparticipatie in wetenschappelijk onderzoek. ZONMw.