The university hospital of Ghent is the first Belgian hospital to have its own Patient Advisory Board for Scientific Research (PAWO).
It consists of experience experts and motivated volunteers who give advice from their perspective and contribute to the development and improvement of clinical research.
What is scientific research?
As a university center, Ghent University Hospital is strongly committed to conducting scientific research to gain insight in how the human body functions and how diseases affect our body. This way, we can find better ways to detect diseases and develop new treatments.
There are different types of scientific research:
• Testing a new drug
• Testing a medical device
• Observational research
• Completing questionnaires
• Donating a sample to the biobank
What is patient participation?
Patients look at scientific research from a different perspective than researchers. From their own experiences as patients, they give valuable insight in how patient-centred research should be conducted. By setting up a patient advisory board at Ghent University hospital, we involve (ex-) patients, partners, parents, informal carers… in all aspects of scientific research. The patient and researchers work together as partners to make scientific research more patient-oriented.
Different levels of involvement exist, as indicated on the participation ladder. The possible level of participation depends on the research project. The lowest step of the ladder represents the patient as a research subject. Higher steps of the ladder, represent patients giving advice and information to researchers. The highest step of the ladder involves research where patients co-create a research study together with researchers. It is recommended to involve patients as early as possible in the research project.
Why a patient advisory board?
Clinical studies can be overwhelming due to an overload of information, studies and consultations. To overcome these issues, the Health, Innovation and Research Institute of Ghent University hospital has set up a Patient Advisory Board for Scientific Research (PAWO).
The members of the Patient Advisory Board help researchers make their clinical scientific research more accessible and attractive to patients.
What does a patient advisory board involve?
• Design of information for (potential) research participants
• Brainstorming about new research topics
• Dissemination of research results to the public
• Reading and discussing research protocols with researchers to ensure feasibility
• Design of informed consent forms and patient information materials
• Thinking about how to improve patient-oriented scientific research
• Providing support with questions from research participants
Why is patient participation so important for scientific research?
Patient participation has become more and more important in recent years. Due to the progress in medical science, there are many more treatments and medical devices that increase our life expectancy. However, it is very important that quality of life is taken into account. Patient participation is a way of making sure the voice of patients and their relatives is heard. Our advisory board ensures that researchers carefully consider the experiences and concerns of patients and caregivers when conducting research. This leads to more willingness to participate and less drop-out in research studies.
Today, funding agencies acknowledge the importance of patient involvement and engagement and it is often a prerequisite to apply for funding. Direct involvement of patients has become an important evaluation criterion and increases the chances of receiving funding.
Would you like to join PAWO?
Are you interested in contributing to the improvement of scientific research?
We are still looking for motivated volunteers ((former) patients, relatives, caregivers).
Please contact us for more information.
Information for researchers
Would you like to get advice from PAWO or would you like to come and explain your research at the PAWO meetings? Feel free to contact us.
PAWO does not handle individual problems or complaints. For this you can contact the ombuds service of UZ Gent.