InleidingDe afgelopen jaren is de etnische en culturele diversiteit in Nederland sterk toegenomen. In 2010 werd 20% van de bevolking als allochtoon ('zelf of ten minste één ouder niet in Nederland geboren', definitie CBS -meestal worden hier op de eerste plaats 'niet-westerse allochtonen' bedoeld) beschouwd. Geneeskunde. Tijdschrift voor Medisch Onderwijs 2011:30(6):292-301.)
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.
Background: Western Governments and the public at large acknowledge the importance of strong patient advocacy groups. A new type of involvement has emerged: patient representatives at the negotiating table, the patient group negotiating as a collective with other stakeholders. However, patient representatives feel inadequately equipped. This study was designed to identify 'issues that matter' to patient groups in The Netherlands and whether these issues are brought to the healthcare and research negotiating table between healthcare providers and health researchers. Methods: Using a qualitative approach, the extent to which patients are involved in the assessment of health research and quality of Dutch healthcare from a patients' perspective was explored and also which criteria they use. A literature search, participant observation and interviews were carried out. Results: The results demonstrate that patients are mainly consulted on an individual basis, but are to a much lesser extent involved as a group. There are patient criteria and guidelines in use for assessment of the quality of care, but there is virtually none for assessment of health policy and research. Many patient criteria are poorly operationalized, vague and abstract and are difficult to apply in practice. Discussion and Conclusion: Based on these results the authors propose and discuss a new concept: a list of patient criteria for evaluating health research, policy and quality of care. These should be developed in dialogue with patient groups. A list of such criteria is expected to be of practical use to many patient advocates in many countries.
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