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Call for interest: Patient contributors in the development of clinical nutrition guidelines and lay summaries

EPF is pleased to announce a call for patient representatives for the process of developing clinical nutrition guidelines and lay summaries. These activities were outlined in an EPF webinar on 15 July 2019.

The webinar included presentations by Prof Stephan Bischoff, European Society for Clinical Nutrition and Metabolism (ESPEN), and Ms Isabelle Manneh, the European Cancer Patient Coalition (ECPC).

Prof Bischoff told the listeners at the webinar that ESPEN is looking forward to co-operating with European patient groups in the process of

  1. Clinical nutrition guideline development and
  2. Producing lay summaries of existing shortened versions of guidelines (“practical guidelines”).

Clinical nutrition guideline development

In co-operation with ESPEN, EPF is looking for 1 - 2 patient representatives for each of the below areas:

  • Nephrology
  • Hospital food
  • Micronutrients
  • Pulmonary diseases

Lay summaries for existing shortened versions of guidelines

In co-operation with ESPEN, EPF is looking for 1 - 2 patient representatives for each of the below areas:

  • Chronic intestinal failure
  • Oncology
  • IBD
  • Surgery
  • Polymorbidity
  • Neurology
  • Geriatrics
  • ICU
  • Hepatology
  • Home enteral nutrition

EPF and ESPEN are planning to start these activities after the summer period.

The work will commence with the development of a lay summary for the shortened version of the IBD guideline. This will be followed by the development of lay summaries for the shortened versions of the CIF, surgery, hepatology and geriatrics guidelines.

For patient involvement in the development of clinical nutrition guidelines, there is co-authorship or a small financial compensation foreseen.

For patient involvement in the development of lay summaries, there is co-authorship and a small financial compensation foreseen.

For more information and expressions of interest, please contact Tanja El-Nemr, policy adviser at EPF.

You can listen to the webinar on EPF’s Youtube channel and download all presentations at by clicking on the powerpointsECPC_Webinar_Patient involvement in nutrition guidelines_15.7.2019.pptx below.

Background

These actions build on the active work EPF has conducted in recent years in the field of nutrition as an integral part of prevention and disease management.

In 2018, ESPEN was attributed a 2-year grant from the United European Gastroenterology (UEG) which is dedicated to the improved dissemination of existing clinical practice guidelines and standards and implementation into practice. This comprises 4 components: shortened versions of the guidelines for practitioners, translation of shortened versions into national languages, guidelines apps and lay versions of the shortened guidelines in an accessible format for patients.

EPF and ESPEN recently confirmed a formal collaboration in the context of this project to develop patient versions of guidelines and to ensure strong patient involvement in the review of new guidelines.

 

Presentations

ECPC_Webinar_Patient involvement in nutrition guidelines_15.7.2019.pptx

EPF_Webinar_Patient involvement in nutrition guidelines_15.7.2019.pptx

ESPEN_Webinar_Patient involvement in nutrition guidelines_15.7.2019.pptx