Article Text

PDF
SP0219 Patient Involvement in Research: Flemish Training of 18 Patient Research Partners
  1. N.P. Caeyers
  1. ReumaNet, EULAR Standing Committee of PARE, MOL, Belgium

Abstract

Introduction More and more, the expertise of patients is used to improve the care for people with RMD's. But also in scientific research, patients can contribute in a most valuable way. By experiencing the rheumatic condition every day, patients have a unique point of view towards their illness. A view that is not always clear for health professionals.

ReumaNet, the Flemish platform for organisations for people with different RMD's, strives towards a larger commitment of patients in research, the development of care paths and the gathering of information for arthritis patients. But to do this, motivated patients need to be available.

Method Using the expertise and best practices of EULAR, ReumaNet started a project to implement the international experiences of the EULAR Network of Patient Research Partners on a national level. A call was launched to find suitable candidates for a two-day training for future patient research partners. Besides patient organisations, also health professionals were asked to put forward possible candidates. In total, ReumaNet received 44 applications for 18 available places. The call was therefore a success and proved that the issue of patient participation in research is a hot topic, also on a national level!

Eightteen patients experts were selected, based on their motivation and condition. The total group (no cancellations!) was trained during a two-day course in March 2014, using theoretical and practical examples, interactions with researchers and a personal story of an experienced research partner. The EULAR brochure and reference cards 'Patient Involvement in Research - A way to success' were translated and made available in hard copy as well as digital format.

Results These eightteen patients are now part of the ReumaNet Network for patient research partners. In the coming time, they will be asked to do reviews and be part of different national projects in the field of rheumatology. ReumaNet will also start to work on the existing EULAR recommendations, to make them available in laymen language for all Belgian patients. In this project, there will be a profound role for the patient research partners.

This project was made possible with the support of the Royal Belgian Society for Rheumatology. ReumaNet also shows its gratitude towards EULAR, for making its expertice available on a national level.

Disclosure of Interest None declared

DOI 10.1136/annrheumdis-2014-eular.6319

Statistics from Altmetric.com

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.