Founding meeting of the patient advisory board

It can only be done together: aligning research and treatment more closely with patient needs

Status: July 11, 2023

The first meeting to establish the CCC Patient Advisory Board took place on July 11, 2023. Despite the 30-degree day, a total of 15 interested parties came together online and on site at the MHH. "The Patient Advisory Board is intended to support the CCC Hannover in aligning research and treatment even more closely with the needs of patients," explains Pia Wilkening, Coordinator of Health Services Research at the CCC. "Nobody knows better where the problems, challenges and potential for improvement lie than the patients themselves and their relatives," says Wilkening.

It is particularly important to the CCC to set as few guidelines as possible regarding the specific structure of the patient advisory board. Managing Director Professor Jörg Haier emphasized at the meeting: "You define what is particularly important to you. We want to gear the processes to your care needs". Rainer Hübert is one of the initiators of the Patient Advisory Board. He holds the position of patient representative at the CCC and will be the interface between the Advisory Board and the Executive Board: "The Advisory Board is the platform where needs are identified, named and proposals developed. A patient representative body cannot do this alone. It needs input from several people". How much time the members of the advisory board invest is entirely up to them: "Everyone as they can". Silke Schwethelm, deputy spokesperson for the patient representatives, supported the words of her colleague Hübert in her contribution and already gave an outlook on the extent to which the advisory board could provide support.

The motivations of the participants at the founding meeting were varied. One participant said: "I find it relieving to talk about other and future generations and to do something for them, because I don't always want to think about my own situation". Another participant is particularly interested in getting involved in clinical research. Others, on the other hand, would still like to be surprised by what being on the patient advisory board entails.

In 2016, regular meetings with self-help groups in the region began under the name "Round Table". "This will continue to take place," emphasize those involved. While the Round Table mainly serves as an information platform for the exchange of information with the self-help groups, the Patient Advisory Board is intended to act at a working level and "get involved" in the CCC.

The first regular meeting of the Patient Advisory Board is planned for September 2023. The content of the Advisory Board will be discussed in more detail at this meeting. Other interested parties, including those from outside the Hanover region, are welcome at any time. You can contact us by email at ccc@mh-hannover.de.