Patients at the negotiating table: exploring appraisal criteria of health research and quality of care used by patient advocacy groups in The Netherlands

Abstract

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.