DONOSIMO BILTEN ECPC (EUROPEAN CANCER PATIENT COALITION) - EUROPSKE KOALICIJE UDRUGA PACIJENATA OBOLJELIH OD RAKA, ZA RAZDOBLJE OD TRAVNJA DO LIPNJA 2023.

Dragi članovi i prijatelji ECPC-a,
 
Nadamo se da uživate u ljetu, da ste sigurni i rashlađeni, da se štitite od štetnog izlaganja suncu i da pijete puno vode.
 
U našem ljetnom biltenu donosimo vam najnovije vijesti iz ECPC-a, EU zajednice pacijenata oboljelih od raka, nedavne razvojne politike, nadolazeće događaje i prijedloge za ljetna čitanja.
 
Sljedeći newsletter stići će u vaše sandučiće krajem rujna jer su ljetni praznici. Uživajte u ostatku ljeta čitajući naše vijesti.
 
Dražen Vincek
 
Izvor: ECPC
 

Dear ECPC members and friends,

We hope you are enjoying summer, staying safe and cool, protecting yourself from harmful exposure to sun and drinking a lot of water.

In our summer Newsletter, we bring you the latest news from ECPC, the EU cancer patient community, recent policy developments, upcoming events, and suggestions for summer readings. 

The next newsletter will land in your inboxes end September, as summer holidays are on. Enjoy the rest of the summer, reading our news.

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As already announced during the recent AGM on June 25, 2023, ECPC will hold a virtual Extraordinary AGM in September to approve the ECPC Accounts 2022 and the Annual Budget 2023.

The date has been set for September 20, 2023, 16.00-18.30pm CET, and we kindly ask all members to save the date and time.  You will soon receive more information and the Agenda of the Extraordinary AGM.

On the 23rd – 25th June 2023, the European Cancer Patient Coalition (ECPC) celebrated its 20-Year Anniversary together with its 20th Annual Congress.

Together with our members from 24 countries, policymakers, researchers, and stakeholders, we focused on collaboration, networking, and listening to the needs of European cancer patients – aligning with the EU’s Beating Cancer Plan and Cancer Mission.

For two days, we covered topics such as the 20 Years of Cancer Policy Advocacy, progress of the EU Beating Cancer Plan and the Mission on Cancer, the EU Health Policy Landscape, the New Cancer Care Delivery Landscape, the Inequalities in Cancer Care and the Role of Biomarkers in Personalized Medicine. 

If you missed the ECPC Congress, rest assured that a dedicated newsletter covering the entire event will be released soon. It will contain all the vital information, such as the Event Report and details about the new website section where you can find all sessions and listen to the live stream on demand.  

Stay tuned for this newsletter to catch up on everything you missed!
 
For now, you can read here the Press Release that has been published. 
 

EMA – New draft reflection paper on AI

The EMA – European Medicines Agency – has released a draft reflection paper on the use of artificial intelligence (AI) in the development, use, and regulation of human and veterinary medicines. The paper covers principles related to AI and machine learning (ML) applications throughout a medicine’s lifecycle. 

Stakeholders are invited to participate in a public consultation until 31 December 2023 by providing feedback through the survey that you can find here

Additionally, a joint HMA/EMA workshop on AI will be held on 20-21 November 2023 at EMA to discuss the topic further. The input received from stakeholders will be analyzed and considered for the finalization of the reflection paper and future guidance development in data-driven regulation within the European Medicines Regulatory Network.

OECI and ECPC – A new collaboration MoU

The long partnership between OECI and ECPC has flourished, creating synergies for significant impact. ECPC has been collaborating for several years now with OECI and has actively contributed to the Accreditation Manual review in 2013. ECPC had an important role contributing to the revision of the accreditation procedures and informing cancer patients about the importance of accreditation of cancer centers.  Collaboration with experts like Prof. Dominique de Valeriola and Dr. Patrick Miqueu have led to innovative concepts for cancer center-patient organizations collaboration.

Their collective efforts have also influenced EU initiatives like the Cancer Mission and Europe’s Beating Cancer Plan. With a new Memorandum of Understanding, endorsed by Dr. Giovanni Apolone and Prof. Francesco de Lorenzo, OECI and ECPC are further uniting their efforts to advance the engagement and active collaboration of cancer patients with cancer centers, improve cancer care and prioritize patient well-being throughout the cancer journey.

The OECI have already initiated a Workgroup of cancer patients and other stakeholders, which according to Dr. G. Apolone, OECI President, will have as mission to prepare a document on the vision and mission of the WG,  to be presented to the OECI Board for approval in early October. ECPC have contributed a chapter in the OECI Magazine No. 1 on “The Role of Cancer Patient Organizations in Comprehensive Cancer Centers” (see p. 24) describing the ECPC and OECI earlier collaboration and suggesting other possible areas of collaboration between cancer patient advocates and the CCCs.

The WG may possibly focus on six cross-sectional fields including: survival and QoL, involvement in research, patient involvement in service design, patient education, patient information and inclusion in decision making, pain and palliative care. ECPC is represented in this new Work Group by its President Francesco de Lorenzo and Kathi Apostolidis, Past President and Chair Scientific Committee, while later more ECPC members are expected to join the WG.

Involving the views of patients and increasing patient representation in cancer research of EU funded projects is of paramount importance for the projects’ results. Patients are at the heart of cancer research, as they are the ones directly affected by cancer and its treatments. Their unique perspectives, experiences, and insights provide invaluable input that can enhance the relevance and impact of research initiatives. Patient involvement in research promotes diversity, fosters collaboration, and leads to more effective strategies for combating cancer in the European Union.

ECPC is actively involved in EU funded projects that encompass various fields, including:

  1. AI, Big Data, and Personalized Medicine
    • You can find more information about the projects CAN-HEAL, QUALITOP, AIDAVA and COMFORT here.
  2. Prevention
    • You can find more information about the project ONCODIR here.
  3. Digital Health
    • You can find more information about the projects TRANSITION and XPANDH here.
  4. European Policy Initiatives.
    • You can find more information about the projects UNCAN.EU, EOSC4CANCER and CAN.SERV here.
  5. Imaging.
    • You can find more information about the projects IMAGIO and IDERHA here.
  6. Palliative Care.
    • You can find more information about the projects INSPIRE, and PAINLESS  here.
  7. Patients and Caregivers.
    • You can find more information about the projects RELEVIUM, LIFECHAMPS, DIADIC, MYPATH and PREFERABLE-II here.
  8. Treatment and Care.
    • You can find more information about the projects IMMUNE-IMAGE and SALVOVAR here.
Through its engagement in these diverse areas, ECPC aims to address the comprehensive needs of cancer patients, advocate for patient-centric policies, and contribute to advancements in cancer research, care, and support across Europe.
Summer is also the time to read some papers, books. We suggest you below a selection of readings: 
 
 
2. Embracing Empathy: A Game Changer for Participant Recruitment and Retention in Clinical Trials?
3. Precision oncology is here. But how do we unlock its potential? Find out here.
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