TITLE:
Patient involvement in lung foundation research: A seven year longitudinal case study
AUTHORS:
G. J. Teunissen, M. A. Visse, D. Laan, W. I. de Boer, M. Rutgers, T. A. Abma
KEYWORDS:
Appraisal; Lung Patient; Participation; Patient Involvement; Lay Expertise; Medical Research; Quality of Life; Commitment
JOURNAL NAME:
Health,
Vol.5 No.2A,
February
27,
2013
ABSTRACT: 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.