Patient involvement requirements for grant applications

The Participatiekompas (in Dutch) website and its Kickstarter for patient involvement in research (in Dutch) provide further background information and practical guidance on patient involvement in research.

Requirements

1. Patients should be involved at multiple stages of the research process, preferably from the earliest possible stage.
   Longfonds places great value on research that reflects the needs and perspectives of people with lung disease. We therefore recommend involving people from your target population as early as possible. Patients and/or patient experts can contribute at different stages of the research process. Their contributions and roles may vary depending on the stage of the research.
2. Where possible, different forms of patient involvement should be combined, allowing patient experts to take on different roles.
   A patient expert is someone who reflects on their own experience of living with a health condition, complements this with the experiences of others, can look beyond their own condition, and has the skills to communicate these perspectives effectively. Patient experts can take on different roles in scientific research, for example as contributors, advisors, partners or co-leaders. Forms of patient involvement may include patient panels, advisory groups, patient advisory boards, steering committees and focus groups.
3. Patient experts should receive appropriate information and support, both when they first become involved and throughout the research process.
   The researcher’s approach is essential to effective collaboration. At the start of the collaboration, researchers and patients or patient experts should discuss their expectations and agree on what each person needs to contribute effectively. Researchers should also provide clear, accessible information about the research and keep patient experts informed about its progress.
4. Patient experts should, at a minimum, be reimbursed for expenses incurred as a result of their involvement.
   Patient involvement should include reimbursement of expenses for participating patient experts. Other forms of recognition for their time and contribution, such as gift vouchers, may also be appropriate. Make sure to include these costs in your research budget.
5. At least two researchers must complete training in patient involvement in scientific research within the first year after funding is awarded, unless they have recently completed equivalent training.
   A lack of knowledge about effective patient involvement can hinder collaboration between researchers and patient experts. Appropriate training can help both researchers and patients establish an effective partnership. PGO Support and School for Participation offer training for researchers and patients on incorporating patient involvement into research, including practical guidance and step-by-step approaches. Up to €1,000 may be included in the funding application to cover the costs of this training.

 

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