Periodic Reporting for period 1 - ICPerMed Secretariat (Secretariat for the International Consortium for Personalised Medicine (ICPerMed))
Reporting period: 2021-03-01 to 2022-08-31
Personalised Medicine (PM) has a high potential to improve prevention, diagnosis and treatment of diseases, by considering individuals' genotypes and phenotypes as well as other biomedical, life style and environmental data. In the last decade, significant advancements have been made especially for the diagnosis and treatment of cancer or rare diseases. However, due to fragmentation and high upfront-investments, the implementation of PM into the health systems remains challenging, besides the various ongoing research and implementation actions on European, national and regional level. To identify and overcome the hurdles for PM, the International Consortium for Personalised Medicine (ICPerMed) was initiated in 2016 as a joint endeavour of over 40 international ministries and funding organisations from 28 countries and the European Commission (EC).
ICPerMed aims at aligning present as well as future efforts in all areas of PM by fostering international coordination of research and innovation funding. For this purpose, ICPerMed develops and operates an international platform for communication and collaboration between funders of PM research. It promotes an interdisciplinary approach to PM and generates best practices and guidelines, and supports PM-related standards, strategies and policies.
Being the ICPerMed Secretariat, this project substantially contributes to the success of ICPerMed by efficiently supporting and coordinating all ICPerMed activities and by assisting in the development of a sustainability strategy. Via monitoring ongoing research funding activities in Europe and beyond, the secretariat serves as the basis for evidence-informed allocation of research funding. The ICPerMed Secretariat provides professional support in organising all ICPerMed events and meetings of ICPerMed bodies. In addition, it guides the dialogue with relevant stakeholders and initiatives, including the so-called ICPerMed Family. The content-driven, organisational and logistical support of the ICPerMed Secretariat will maximise the unique and long-term impact of ICPerMed by strengthening the leading role of ICPerMed members in the successful implementation of PM in a global context. Furthermore, the ICPerMed Secretariat supports the preparation and establishment of the foreseen European Partnership for Personalised Medicine (EP PerMed).
ICPerMed aims at aligning present as well as future efforts in all areas of PM by fostering international coordination of research and innovation funding. For this purpose, ICPerMed develops and operates an international platform for communication and collaboration between funders of PM research. It promotes an interdisciplinary approach to PM and generates best practices and guidelines, and supports PM-related standards, strategies and policies.
Being the ICPerMed Secretariat, this project substantially contributes to the success of ICPerMed by efficiently supporting and coordinating all ICPerMed activities and by assisting in the development of a sustainability strategy. Via monitoring ongoing research funding activities in Europe and beyond, the secretariat serves as the basis for evidence-informed allocation of research funding. The ICPerMed Secretariat provides professional support in organising all ICPerMed events and meetings of ICPerMed bodies. In addition, it guides the dialogue with relevant stakeholders and initiatives, including the so-called ICPerMed Family. The content-driven, organisational and logistical support of the ICPerMed Secretariat will maximise the unique and long-term impact of ICPerMed by strengthening the leading role of ICPerMed members in the successful implementation of PM in a global context. Furthermore, the ICPerMed Secretariat supports the preparation and establishment of the foreseen European Partnership for Personalised Medicine (EP PerMed).
ICPerMed structures and governance:
Essentially, the ICPerMed chairs and bodies (Steering Board, Working Groups, Advisory Board, Stakeholder Forum and Executive Committee) were constantly supported in their organisational and logistical needs, incl. taking the final steps in establishing the Advisory Board and Stakeholder Forum.
Further, an active exchange took and takes place with the Coordination and Support Actions (CSAs) in support of ICPerMed as well as the ERA Net Cofund ERA PerMed, under the umbrella of the so-called ICPerMed Family. E.g. a Family Meeting and a dedicated meeting of the CSAs was organised.
The preparation of a European Partnership for Personalised Medicine (EP PerMed) was supported, e.g. an info day was organized together with ERA PerMed, info sheets were published and first steps towards an integration of ICPerMed in EP PerMed were taken. Partners of the ICPerMed Secretariat contributed significantly to these activities.
Stimulating cooperation & transfer of knowledge:
One goal of ICPerMed is to create suitable environments or frameworks stimulating cooperation and exchange between stakeholders and ICPerMed and enabling knowledge-transfer to specific targeted groups. To this end, one Family Meeting and one workshop were successfully conducted during the first 18 months of this project, in accordance with the event concept. Further events are currently under preparation, e.g. a conference in Paris and further a workshop in Pamplona that will support the preparation of EP PerMed.
Training and awareness support for integrating Personalised Medicine (PM) research results into healthcare:
In the first 18 months of the project, two ICPerMed Recognitions “Best Practices in PM” were launched. Further, eight new best practice examples were published on the ICPerMed website.
A training event was organised and another one is in preparation.
Additionally, an expert database was set-up.
Accelerating translation, implementation and innovation:
A guidance document on services of the Biological and Medical Research Infrastructures (BMS RIs) and a set of recommendations was developed and distributed.
Further, a guideline document to collect recommendations for funding agencies involved in PM-related funding calls was developed, to foster open access to PM research data and the published research results.
First steps towards identifying the barriers that PM research projects encounter concerning data exploitation and the implementation of their results have been taken.
A list of new stakeholders to be targeted was composed, in order to establish collaborations to foster PM research data sharing, transfer and exploitation.
Research and Implementation Assessment:
The ICPerMed Secretariat collects information on PM-related initiatives, programmes, research projects and activities in Europe as well as on significant advances in research and implementation of PM on an international level. It developed a mapping database that includes information about programmes allowing funding of research in the field of PM but also information of funding organisations within the participating ICPerMed member/observer countries. The database went online in June 2018 and is updated regularly.
First steps towards the evaluation and impact assessment of ICPerMed were taken.
The State-of-the-Art Report 2021 was published.
Dissemination:
The secretariat developed a dissemination plan specifically tailored to different target groups as well as dissemination material.
In addition to the above already mentioned activities and publications, more than 70 news items, six ICPerMed newsletters, 12 flyers and one meeting report were prepared and published.
About 240 posts were posted via the ICPerMed Twitter and LinkedIn channels.
Essentially, the ICPerMed chairs and bodies (Steering Board, Working Groups, Advisory Board, Stakeholder Forum and Executive Committee) were constantly supported in their organisational and logistical needs, incl. taking the final steps in establishing the Advisory Board and Stakeholder Forum.
Further, an active exchange took and takes place with the Coordination and Support Actions (CSAs) in support of ICPerMed as well as the ERA Net Cofund ERA PerMed, under the umbrella of the so-called ICPerMed Family. E.g. a Family Meeting and a dedicated meeting of the CSAs was organised.
The preparation of a European Partnership for Personalised Medicine (EP PerMed) was supported, e.g. an info day was organized together with ERA PerMed, info sheets were published and first steps towards an integration of ICPerMed in EP PerMed were taken. Partners of the ICPerMed Secretariat contributed significantly to these activities.
Stimulating cooperation & transfer of knowledge:
One goal of ICPerMed is to create suitable environments or frameworks stimulating cooperation and exchange between stakeholders and ICPerMed and enabling knowledge-transfer to specific targeted groups. To this end, one Family Meeting and one workshop were successfully conducted during the first 18 months of this project, in accordance with the event concept. Further events are currently under preparation, e.g. a conference in Paris and further a workshop in Pamplona that will support the preparation of EP PerMed.
Training and awareness support for integrating Personalised Medicine (PM) research results into healthcare:
In the first 18 months of the project, two ICPerMed Recognitions “Best Practices in PM” were launched. Further, eight new best practice examples were published on the ICPerMed website.
A training event was organised and another one is in preparation.
Additionally, an expert database was set-up.
Accelerating translation, implementation and innovation:
A guidance document on services of the Biological and Medical Research Infrastructures (BMS RIs) and a set of recommendations was developed and distributed.
Further, a guideline document to collect recommendations for funding agencies involved in PM-related funding calls was developed, to foster open access to PM research data and the published research results.
First steps towards identifying the barriers that PM research projects encounter concerning data exploitation and the implementation of their results have been taken.
A list of new stakeholders to be targeted was composed, in order to establish collaborations to foster PM research data sharing, transfer and exploitation.
Research and Implementation Assessment:
The ICPerMed Secretariat collects information on PM-related initiatives, programmes, research projects and activities in Europe as well as on significant advances in research and implementation of PM on an international level. It developed a mapping database that includes information about programmes allowing funding of research in the field of PM but also information of funding organisations within the participating ICPerMed member/observer countries. The database went online in June 2018 and is updated regularly.
First steps towards the evaluation and impact assessment of ICPerMed were taken.
The State-of-the-Art Report 2021 was published.
Dissemination:
The secretariat developed a dissemination plan specifically tailored to different target groups as well as dissemination material.
In addition to the above already mentioned activities and publications, more than 70 news items, six ICPerMed newsletters, 12 flyers and one meeting report were prepared and published.
About 240 posts were posted via the ICPerMed Twitter and LinkedIn channels.
As the secretariat of ICPerMed, this project assists the development and the various operations of an international platform for collaboration between funders of PM research. The major impact expected is based on the high strategic potential and uniqueness of ICPerMed itself. The secretariat supports the ICPerMed members to coordinate research and innovation as well as networking efforts and dialogue not only across borders, regions and countries, but also across disciplines and sectors. Thus, the secretariat significantly contributes to the success and long-term impact of ICPerMed by supporting its operation and by assisting in the interaction and cooperation with other relevant parties and key stakeholders in the area. It maximises visibility of ICPerMed itself, of the results and achievements of ICPerMed and of funding activities initiated by its members.
Furthermore, the secretariat contributes to strengthening ICPerMed members’ leading role in the successful implementation of PM in the global context, provide support and guidance in balancing the research responsibilities regarding PM implementation between the EC and the MS, and provide a sustainable platform for "innovation diplomacy" in the area of PM, going beyond health diplomacy and science diplomacy.
Furthermore, the secretariat contributes to strengthening ICPerMed members’ leading role in the successful implementation of PM in the global context, provide support and guidance in balancing the research responsibilities regarding PM implementation between the EC and the MS, and provide a sustainable platform for "innovation diplomacy" in the area of PM, going beyond health diplomacy and science diplomacy.