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

Abstract

<p> <span style="font-size:12px;" "="">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. </span><span style="font-size:12px;" "="">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.</span><span style="font-size:12px;" "=""> This seven year study offers valuable insight in patient involvement against the background of the changeing health discourse.</span> </p

Adolescents' experiences with patient engagement in respiratory medicine

“…Although there is growing attention being paid to the participation of adolescents in decision‐making processes regarding treatment, service improvement, and scientific health and biomedical research, 4–6 it is still rare in clinical practice. In clinical research, funders increasingly encourage, and in the Netherlands even require, researchers to work actively with patients to advance research and clinical care 7,8 …”

“…In clinical research, funders increasingly encourage, and in the Netherlands even require, researchers to work actively with patients to advance research and clinical care. 7,8 The United Nations Convention on the Rights of the Child (UNCRC) has been one of the driving forces of child participation. [9][10][11] The UNCRC advocates that children and adolescents have a right to be heard and considered in any matters affecting them.…”

Patient participation in research funding: an overview of when, why and how amongst Dutch health funds

“…Patient participation (PP) initiatives in the research process have been appearing since the 1970s, for example the founding of a National Association for Patient Participation in the UK and a testimony written by an American patient regarding her disease which led to her reviewing research proposals for a funding organisation for cancer research [1, 2]. It is however only recently that PP has gained ground and become more widely accepted [3–5]. Previously, decision-making on health-related research was mainly dominated by experts such as medical doctors, researchers and policy-makers [6–8].…”

“…Patients were invited to provide information on living with a disease and issues related to quality of life. Since then, PP has evolved, and patients are increasingly engaged in decision-making on research, initially in setting research agendas [9, 10] and more recently in appraising research proposals [5]. In this study we use ‘patient participation’, (in literature) this is also known as patient involvement or engagement.…”

“…For example, in a UK-based study, funding bodies found that sometimes PP was merely a ‘tick-the-box’ exercise [8]. Some studies address these issues, most often in a specific setting, such as PP in funding decisions for specific diseases [3–5]; papers written from a patient organisation’s point of view [16]; and based on national views ([17]; van [8]).…”