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Patient involvement in research

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Patient Involvement is an essential aspect of conducting meaningful and impactful research that aligns with the needs and expectations of patients. The UMCG wants to increase the involvement of patients in scientific medical research.

Patient and researcher working together

Involving patients and using their knowledge, experiences, needs and interests can improve research in multiple ways. Patient involvement leads to:
 
  • More relevant research with a higher change of results that meet the needs and expectations of patients;
  • Better understanding of what patients find acceptable;
  • A higher societal relevance of research;
  • Improved participant experience during the study, reducing drop outs;
  • More and better communication about research results;
  • Reduces ’research waste’ and inspires both researchers and patients;
  • Increased chance of funding.

Good practices: listen to our podcasts

If you are interested in learning about how patients are actively collaborating with researchers at the UMCG, we invite you to listen to our podcasts. 

  • UMCG Research Talks (ENG): in this podcast, we discuss research news and important topics in the UMCG research field.
  • UMCGesprekken (NL): within the UMCG, there are numerous meaningful and inspiring stories to share. Patients, caregivers, students, and researchers share their experiences in this podcast.
Selection of inspiring examples of patient involvement:

  • Molecular biologist Ody Sibon has been studying a rare disease called Pantothenate-Kinase-Associated-Neurodegeneration (PKAN) for years. Her ultimate goal is to help patients with her research. By coincidence she discovers a vitamin derivative in a fruit fly model that might also help PKAN patients. But how do you bring your research to patients?

    Read the background article and listen to the podcast 'Bringing your research from bench to bedside'

  • 167.000 Northerners have been participating in Lifelines for years, all in order to discover how we can all grow older in a healthier way. We are indeed living longer, but a significant portion of the additional years we gain are spent in poor health. What does this mean for society, and what can we do together to address this?

    Read the background article and listen to the podcast 'Hoe 167.000 Noorderlingen ons helpen gezonder ouder te worden'. 

  • Only half of the people prescribed medication take it correctly, at the right time and in the right amount. This is called medication adherence. It is not always easy to take medication properly, but it is crucial, as researcher Job van Boven knows. Therefore, he is studying digital tools to assist patients in effectively using their medications.

    Read the background article and listen to the podcast 'Therapietrouw: waarom is het belangrijk en hoe kunnen we patiënten beter helpen?'

  • If you have a common disease, there are plenty of patients willing to participate in scientific research, and you often receive funding as well. But what do you do when dealing with an extremely rare condition for which there is no cure? In that case, parents and researchers work together to find a solution. To hear what this unique collaboration has achieved for parents of children with chromosomal abnormalities and for science, tune in to the eighth episode of our podcast, UMCGesprekken.

    Read the background article and listen to the podcast 'Geen geld en geen patiënten voor onderzoek? Samen lukt het wél!'

Incorporate patient involvement in your research

Do you want to know more about patient involvement in research at the UMCG? Or do you want do to discuss how to incorporate this in your research? Please contact us.