Patients participate in research about themselves

The Netherlands Institute for Health Services Research (NIVEL) has developed the online training PatientTIME that helps patients with malignant lymphoma prepare for a consultation with a medical specialist or nurse. Patients’ treatment phase and communication needs determine how they navigate the website, and they have been actively involved in its development from the start. Researchers from NIVEL, Hematon, Radboud University Nijmegen Medical Center (Radboudumc), and VU University Medical Center Amsterdam (VUmc) have written about this in an article in the Journal of Medical Internet Research Protocols.

There are great expectations for “eHealth”: online information and digital menus that help patients find their way around the health care system. Even so, there is little patient involvement in the development of the countless new eHealth applications. Patients might be interviewed on one occasion or have the intervention explained to them once, but this tends to happen at a later stage in the development process or even after this has been completed.
From day one

NIVEL researchers involved patients from day one in the development of a website for patients with lymphoma cancer. There was a patient in the project group who participated as a full member alongside the researchers. During the entire process, this patient made sure the project remained “patient-centred.” New patients were involved in different ways at every step of the website’s development.

NIVEL researcher Inge van Bruinessen: “It takes time and flexibility to get seriously ill patients involved in such a project, but there are very valuable insights to be gained from this and we’re using them to develop a tailored intervention.” To reach patients who wanted to take part, Hematon – a patient association that includes the former “Dutch Lymphoma Association” (Lymfklierkanker Vereniging Nederland) – was involved from the very start. This organisation will also play a role in implementing the intervention as part of the care process.
Video clips
Before the participating lymphoma patients visit their doctor, they can go to the PatientTIME website to get ready for the consultation. There they can watch a number of video clips tailored to their treatment phase and personal needs (for example, on things they find difficult during a consultation, as well as a solution). Inge van Bruinessen: “In this way, we hope that patients will be well prepared when they visit their health care professional, and that the talk they have will meet their needs better.”

Alpe d’HuZes KWF Kankerbestrijding
Cooperating partners
Hematon (Dutch)