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ALERTNESS; structural signaling for up-to-date guidelines

With financial support of ZonMw, IKNL partnered with the Dutch Association of Obstetrics and Gynecology (NVOG), Olijf Foundation and National Comprehensive Cancer Network® (NCCN®) to start the project ALERTNESS. The aim of the ALERTNESS project is to identify new developments in science and clinical practice to support timely guideline revision. Endometrial (uterine) cancer  is the most common gynecological cancer in Western countries. In the Netherlands, about 1,900 new cases are diagnosed  every year. All women with endometrial cancer are discussed in a multidisciplinary meeting and, if necessary, sent to one of the eight gynecological-oncology centers in their region. For optimal quality of care, it is important to treat these women according to the latest insights. Partly because several successive (gynecological) care providers are involved, an up-to-date and accessible guideline is crucial to ensure that every patient receives the right care in the right place.

The Dutch Association of Obstetrics and Gynecology (NVOG) has started innovating the revision process of guidelines. The ALERTNESS project takes the next step in this process by developing new techniques for keeping the guideline up-to-date. For this purpose, the project group uses various signaling sources to determine whether changes are necessary in the guideline, namely the guidelines of the National Comprehensive Cancer Network® (NCCN®) and the Netherlands Cancer Registry (NKR). The endometrial carcinoma guideline has served as a pilot for the development of the new revision process. This project started in January 2021 and will run for 3 years. It is part of the program Quality of Care: Support of the Healthcare Institute.

It is challenging for the multidisciplinary expert groups and gynaecological oncology centers to keep an overview of all newly available knowledge and to integrate this timely into the guideline. Guideline revisions are also lengthy and expensive processes, which means that guidelines are often already outdated as soon as they are published. The Dutch Association for Obstetrics and Gynecology (NVOG) and the guideline committee are therefore looking for a good source of signaling for these developments.

The team

ALERTNESS project management is the responsibility of Michèle Thissen (IKNL). From IKNL, Maaike van der Aa (senior researcher), Jurrian van der Werf (senior clinical informatician), Gijs Geleijnse (senior data scientist), Suzanne Verboort (senior advisor), Arturo Moncada-Torres (data scientist), Olga van der Hel (epidemiologist), Thijs van Vegchel and Kees Ebben (clinical informaticians), and Mustafa Karaalioğlu (software designer) have contributed to this project. From NVOG, dr. Cor de Kroon fulfills the role of main applicant for this project. Furthermore, dr. Astrid Vollebregt (gynecologist, chair NVOG), dr. Brigitte Slangen (gynecologist-oncologist, chair NVOG oncology pillar) and dr. Channa Schmeink (gynaecologist) are involved in the project on behalf of NVOG. Arja Diepstraten (coordinator quality of care) and dr. Arlette van der Kolk (board member of the Olijf Foundation) are involved as patient representatives on behalf of the Olijf Foundation. Finally, a delegate of the Uterine Neoplasms guideline working group of the National Comprehensive Cancer Network® (NCCN®) participates in this project. NCCN® is a non-profit alliance of 31 leading cancer centers in the United States that also takes care of the American guideline for Uterine Neoplasms.

Objectives

The main objective of the ALERTNESS project is to develop a new guideline development process that will allow guidelines to be revised more frequently and thus be more up to date. The core of the new process are smart innovative techniques that allow guideline owners to take quick action and consider updates when developments in science or local practice are identified. The Dutch guideline for the diagnosis and treatment of endometrial carcinoma will serve as a pilot for the development of this new process. The NVOG is the owner of this guideline.

The second objective of the project is to better support healthcare providers and patients in the decision-making process by making multiple decision support sources accessible in one overview. For these purposes, the NVOG guideline, NCCN® guideline, and NKR data  are remodeled according the same information standard. In this way, these 3 knowledge sources can be visualized in an interactive way. Using insights from multiple sources simultaneously increases the level of clinical support for individual patients' decision-making. This project investigates how to represent this visualization the best and how healthcare providers and patients experience this visualization, and translates these insights into a prototype.

Design and outcome measures

In this project we develop smart and innovative techniques that deliver signals for consideration of a guideline update:

  1. identifying new international scientific developments (based on modifications of the NCCN® guideline) and
  2. signaling deviations or changes in clinical practice (based on data from the NKR).

Receipt of a signal from one of these sources leads to an assessment of the identified subject(s) by the guideline committee. The guideline working group can then consider initiating and executing a (modular) guideline revision in accordance with the AQUA guideline. Effects of the innovations will be measured in terms of

  1. number of alerts relevant for revision,
  2. speed with which the guideline is updated,
  3. improving guideline adherence and
  4. satisfaction of involved professionals

Results

  • ZonMw news item: Improved oncological care with up-to-date guidelines
  • IKNL news item: Smarter update of the guideline with ICT solutions
  • About the underlying techniques:
    • Hendriks, M. P., Verbeek, X. A., van Vegchel, T., van der Sangen, M. J., Strobbe, L. J., Merkus, J. W., ... & Siesling, S. (2019). Transformation of the national breast cancer guideline into data-driven clinical decision trees. JCO clinical cancer informatics, 3, 1-14.
    • M. Hendriks, T. van Vegchel, M. van der Sangen, K. Ebben, S. Siesling, X. Verbeek, “Clinical Practice Guidelines in the Era of Data-Driven Personalized Cancer Treatment”. NCCN 23rd Annual Conference: Improving the Quality, Effectiveness, and Efficiency of Cancer Care. Florida, USA. March 22-23, 2018.
    • K. Ebben, M. Hendriks, T. van Vegchel, J. van der Werf, M. van der Sangen, L. Keikes, X. Verbeek, “A Novel Method for Clinical and Computer Interpretable Presentation of Clinical Practice Guidelines by Data- Driven Decision Trees”. NCCN 23rd Annual Conference: Improving the Quality, Effectiveness, and Efficiency of Cancer Care. Florida, USA. March 22-23, 2018.
    • K. Ebben, P. Lamb, J. van der Werf, M. Hendriks, J. Skinner, R. Vernooij, L. Keikes, X. Verbeek, “A Method for Structured Comparison of Oncologic Clinical Practice Guidelines”. NCCN 23rd Annual Conference: Improving the Quality, Effectiveness, and Efficiency of Cancer Care. Florida, USA. March 22-23, 2018
    • View the posters

Endometrial carcinoma decision tree on Oncoguide

Want to know more?

Check out the ZonMw project page or contact Michèle Thissen, project manager