About half a million people in Germany are diagnosed with cancer every year and this figure is expected to rise to 600,000 new cases per year in the near future. Medical progress has improved possibilities for treatment considerably in recent years, yet cancer remains the second most common cause of death in Germany. Research is therefore our most important tool in the fight against cancer.
No institution, discipline or stakeholder group can on their own achieve substantial progress in the medical treatment and prevention of cancer.  Only close cooperation across disciplinary boundaries enables us to be successful.

This is why the relevant stakeholders involved in the fight against cancer in Germany launched the National Decade against Cancer in 2019 on the initiative of the Federal Ministry of Education and Research (BMBF). We are pursuing a cross-disciplinary approach with the joint, long-term goal of facing up to the challenge posed by cancer. The involvement of patients is a key priority of the National Decade against Cancer. Knowledge about the patients’ perspective enables researchers to better focus their work on the actual needs of affected people.

A new standard for Europe

Patient-centred cancer research is to become standard even at European level. Cancer research is opening its doors to patients to involve them in all the phases of research in a transparent manner, from the formulation of the problem through to the utilisation of the results. In order to achieve this ambitious goal, international participants drafted a paper outlining the “Principles of Successful Patient Involvement in Cancer Research” in a one-year bottom-up process. This paper will be presented at the international conference “Principles of Successful Patient Involvement in Cancer Research – The Way Forward”, which will be held on 7 September 2021 from 9.30 am and live-streamed for online participation.

Federal Research Minister Anja Karliczek will open the conference together with Simona Kustec, Minister of Education, Science and Sport in Slovenia. The focus of the conference is on the “Principles of Successful Patient Involvement in Cancer Research”, a compilation of the experience and findings from many national, European and international initiatives to foster patient involvement. The principles cover a broad range of aspects of successful involvement: Why are confidence and partnership on an equal basis so important for participation? What is the best time in the research process for patients to become involved? How important are communication, training and the standardisation of methods for involvement? The principles provide valuable insights into the current situation of participation and the areas with the greatest need for action. The paper will be presented at the conference, where a panel will discuss the next steps towards the actual use of the Principles of Successful Patient Involvement.

Background

During the current Trio Presidency of the Council of the EU, the Declaration “Europe: Unite against Cancer“ was adopted in autumn 2020 under the leadership of the German Federal Research Ministry. The Declaration was signed by the research ministers from Germany, Slovenia and Portugal and defines joint approaches to strengthening cancer research in Europe. A main objective of the Declaration is to enhance patient involvement in cancer research to focus research more closely on patient needs.

Based on this Declaration, the BMBF launched a bottom-up initiative in cooperation with the Trio partners. The aim is to ensure that patient involvement in cancer research will increasingly become standard in Europe. International representatives from patient organisations, participatory research and cancer research have jointly drafted the “Principles of Successful Patient Involvement” in a one-year process.