Patient involvement

Patient involvement means actively engaging people with lung disease in your research—not as research participants, but as partners in the research process. Their lived experience provides valuable insights that can complement scientific expertise. By incorporating the patient perspective, you can better align your research with patients’ needs and priorities, increasing its relevance and potential impact.

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    Benefits of patient involvement

    Involving people with lung disease as partners in your research offers many benefits. Their lived experience provides valuable insights that can complement scientific expertise.

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    How to involve patients in your research

    There are various ways to involve patients in scientific research. For example, they can complete a questionnaire, discuss their perspectives in a focus group, or establish a patient advisory panel.

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    What should you consider?

    When involving people with lung disease as partners in your research, there are several important aspects to consider. We have outlined the key points.

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'Sterk Participatie Prijs'

Researchers who made patient involvement an integral part of their research were eligible for the Sterk Participatie Prijs. With this award, Longfonds aims to encourage researchers in the field of lung health to involve people with lung disease as partners at multiple stages of the research process.

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Examples of successful patient involvement

In recent years, involving patients throughout the research process—from start to finish—has led to valuable outcomes and increased the relevance of research. We would like to share some successful examples of patient involvement in practice.

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Patient involvement requirements for grant applications

Longfonds has established minimum requirements for patient involvement in order to be eligible for research funding. Follow the link below for background information on patient involvement in research. This information will help you understand the requirements and put them into practice in your research.

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Patient involvement is defined as:

“The involvement of patients and patient organisations as partners in research, policy and quality of care, alongside researchers, policymakers and healthcare professionals. It draws on the unique experiential knowledge of patients and patient organisations to improve the relevance and quality of research and care, and ultimately patients’ quality of life.”

In this video (in Dutch), produced by ZonMw, researchers explain the value of patient involvement.

Patient involvement does not mean involving people with lung disease as research participants. Instead, it means actively incorporating their perspectives and lived experience into the research process. Their insights can help researchers identify the challenges people with lung disease face and understand which solutions matter most to them. This can improve the quality of research and make it more relevant to patients.

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