Patient involvement in lung foundation research: A seven year longitudinal case study

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.