Neuruppin, 30 June 2023

Medical guidelines primarily serve to give evidence-based and reliable support to physicians in making decisions. But they are also intended to reflect patients’ perspectives and expectations. Shared Decision Making (SDM) is a procedure to facilitate and encourage joint decisions by patients and doctors. Both parties involved jointly decide on the therapy to be applied, as equal and active partners and on the basis of the same information.

The prevailing opinion at national and international level is that guideline and SDM should be mutually dependent. But preliminary studies indicate that guidelines in Germany in their present form give only limited support to joint decision-making in the sense of SDM.

The EDELL project (short for development and testing of a tool to integrate SDM in guidelines) started in October 2022 under the direction of Prof. Dr. Dawid Pieper, head of the Institute of Health Services Research and Health Systems Research at the Brandenburg Medical School (MHB). Project partners are the German Agency for Quality in Medicine, the Clinical Guideline Services und SHARE TO CARE. Support comes from the Guideline Program Oncology and an international advisory committee.  

Joint decisions

The idea behind the EDELL project is to develop a procedure comparable to that used in setting up guidelines, to ensure that SDM will become an integral part of guidelines. To this end, the group of researchers reviews the international specialist literature and interviews experts in the field. Researchers draw up a concept on this basis and in parallel, for which they define patients’ priorities.

They establish the SDM procedure in a subsequent step and integrate it into an existing database with decision-making aids. A final field test follows involving between twelve and fifteen guidelines, to review the new procedure and the database under real-life conditions, i.e. during the preparation of the respective guideline, and adapt them if necessary.

Funding for the project of approximately € 672,000 Euro over a period of three years comes from the Innovationsausschuss. This pool of experts at federal level is formed by the four major self-organization bodies in the health sector - GKV (National Association of Statutory Health Insurance Funds), KBV (Federal Association of SHI Physicians), KZBV (Federal Association of SHI Dentists) and DKG (German Hospital Association) – and the Ministries of Health and of Education and Research. Patient representatives are involved where rights of application and of active participation in decision-making are concerned. The body aims to ensure high-quality health services for the entire population through continuous expansion of the range of services offered by statutory health insurers.    

Prof. Dawid Pieper points out that, if successful, procedures to support joint decision-making by doctors and patients will become an integral part of medical guidelines. If they are available in digital format, a link with the database produces immediate relevant decision-making aids during and for the doctor-patient conversation.