OECI launches the EPIC-CARE Patient Working Group at the Oncology Days 2024 - Helsinki

Last week, on June 12-13, the 46th Oncology_Days Conference[1] and Annual General Meeting of the OECI - Organisation of European Cancer Institutes took place in Helsinki, hosted by the Helsinki University Hospital Comprehensive Cancer Center.

Among several interesting sessions on cancer care, policy and research, the most engaging one was the Session on “Collaboration for Good Practices with the Patients Working Group”.?

This session marked the official launch of the OECI EPIC-CARE Patient Workgoup (Enhancing Patient Involvement in Cancer Care and Research). It was attended by OECI network members, representatives and staff members of CCCs - comprehensive cancer centers/CCs-cancer centers, EPIC_CARE Patient Working Group (WG) members. ?Among the attendees were patient representatives and invited speakers in the Patients WG session, Francesco de Lorenzo, President FAVO, Alexander Brutti, Chief Technical Officer/Patients en Reseau-France and the undersigned, co-founding member and past President ELLOK - Hellenic Cancer Federation, past President ECPC.?

The OECI initiated last year a Patients Working Group, whose mission would be

“to collect, analyse & disseminate successful, patient-oriented collaborative practices in cancer care and research; a “fact-tank” providing a supportive task force for OECI cancer centres that need methodological tools and expertise to implement new initiatives”.

The first to respond to the OECI’s call to join the WG during the Oncology Days in Paris in June 2023 were attending clinicians, researchers, policy makers, staff members of the OECI Network of Cancer Centers and #ECPC- European Cancer Patient Coalition , with whom OECI had executed in 2022 an MoU for collaboration, following their long standing collaboration[2],[3].

These initial members of the WG worked in the summer of 2023 to prepare the basic concept paper for this new OECI WG, named OECI-EPIC Care Patients WG (Enhancing Patient Involvement in Cancer Care and Research) and plan the session program for the Oncology Days 2024.

The Session was welcomed by OECI’s President, Dr. Giovanni Apolone , who highlighted the role of cancer patients, carers and families in the EU Cancer Plan and in the Mission on Cancer. He further highlighted the role of patients and the requirements for patient involvement of the EU Joint Actions CraNE (Network of Comprehensive Cancer Centers),? JANE (Networks of Excellence) and of the EU funded projects CCI4EU and EUonQoL .

He stressed the importance of close collaboration of the network of the OECI?#CCCs_Comprehensive Cancer Centers and #CCs_Cancer_Centers with patient organizations for improving cancer care delivery and incorporating patient insights, preferences and needs in their care and in cancer research.

Delia Nicoar? , Public Health Specialist at Cancer Institute Prof. Dr. Ion Chiricuta Cluj-Napoca,?Romania, presented how the WG worked on the draft concept of the EPIC-Care Patients WG and gave an in-depth overview of its key elements. Among other, Dr. Nicoara highlighted the OECI EPIC-CARE Patients WG mission, membership and responsibilities of WG members, objectives of the proposed action plan and the values that will govern the WG and concluded by inviting participants to comment.

Francesco de Lorenzo, President of FAVO -Italian Federation of Volunteer Patient Organisations, Board Member of the European Academy of Cancer Sciences-EACS and past President of the European Cancer Patient Coalition-ECPC, in his presentation co-authored with the undersigned, went beyond the draft concept of the EPIC-Care Patient WG to shed light on the prominent role of paticsents and their carers in the EU Cancer Plan, Mission on Cancer, EU Joint Actions, CSAs-Coordination Support Actions, and projects.

He brought up?the many challenges that cancer patient organisations and their members face during the cancer pathway, the importance of collaboration?among patient?organisations and CCCs/CCs, how already CCCs/CCs and patient organisations contribute to fulfilling the recommendations of the EU Cancer Plan and Cancer Mission through cancer advocacy and participation in EU Joint Actions and research programs. The EPIC-Care Patient WG will strengthen such participation through?close collaboration, co-creation, facilitation of inclusion of patient representatives in the cancer centers.

Francesco de Lorenzo noted that OECI, having long ago recognized the key role of patient organisations as a bridge between cancer care and cancer research and their role as change agents through cancer advocacy[3],[4], has already included in the qualitative standards for accreditation and designation a specific chapter on patient involvement and empowerment [5].

Thus, Chapter 3 of Appendix II of OECI_AandD starts with

“It is the mission of the cancer center to encourage patient involvement in services”[5].

It is worth noting that already in 2015, ECPC and OECI had agreed on the following concepts[6] [7] for collaboration of patients with cancer centers:

Francesco de Lorenzo concluded by presenting the potential areas of collaboration of patient organisations with the OECI network of CCCs/CCs [7] and how such areas correspond to and fulfill the cancer policy and research recommendations of the EU Commission.

Next, Paulina Bravo , Director of Education and Participation in Health/FALP-Foundation Arturo Lopez Perez, Chili, co-presented with Francesco de Lorenzo the results of the survey that OECI conducted in March 2024 among the comprehensive cancer centres - CCCs and cancer centers - CCs of its network. The purpose of the 2024 survey was to update data on the involvement of patient organisations in the day to day work and governance of the comprehensive cancer centers. Most of the respondents confirmed that they have some level of collaboration with patient organisations. There is still more information needed about how this collaboration is organized, how it operates, who are the “players”, what is the format in which it is delivered in the EU member states where the CCCs/CCs operate.

Eventually, a new survey focusing on the qualitative data of the CCCs/CCs collaboration with patient organisations will be needed to complement the results of the current one. All the more, as some EU member states, like France, where the role of “patient partenaire” is more and more recognized, are moving towards institutionally including them as teaching and/or hospital staff. However, in other EU member states patient advocates do not yet have a role in cancer centers, making it difficult to support their members through their cancer pathway.

Alexandre Brutti , Chief Technical Officer of Patients en Reseau/France, presented the cancer survivor’s perspective on the EPIC-CARE Patient WG. Alexandre is an active patient advocate, who sought to learn more about the disease and available treatments and connect with patient organizations to network with other patients. Besides Patients en Reseau, Alexandre is also active in other patient organisations, a member of advisory boards of EU funded projects and of patient committees of two French Cancer Centers. Commenting on the results of the OECI Survey of their CCCs/CCs network, ?Alexandre Brutti noted that from the patient perspective, among the top priorities of patients for collaboration with CCCS are Nutrition, Physical Exercise & Rehabilitation, Return to Work.

The presentations of the EPIC-Care Patient WG were followed by a lively discussion, with questions from the participants and comments from the presenters and attending members of the OECI. ??

What we have retained from the OECI Oncology Days 2024 is the existence of a vibrant, commited and collaborative network of Comprehensive Cancer Centres (CCCs), Cancer Centres (CCs), healthcare professionals, researchers, policy makers, and patient organizations/advocates. Together with the OECI Board and staff, they are dedicated to realizing the true essence of "patient-centered" care, emphasizing the commitment to patient well-being and underscoring the importance of collaboration in advancing cancer care and research.

Back in late 2013 to mid-2014, I had the opportunity to contribute the patient perspective, as an ECPC representative, during the revision of the OECI A&D Programme. This experience left a lasting impression on me. While I was familiar with quality inspection and accreditation from a business standpoint, being actively involved in accreditation and cancer policy discussions resonated deeply as a cancer survivor. It was for me a hands-on demonstration of how patient advocates can shape cancer care delivery by translating their lived experiences into policy, methodology, and standards.

Another memorable moment occurred in 2014 when, as the ECPC Project Lead, I reviewed and provided the patient perspective on the Research Protocol for the EU Funded Project eSMART[9]. This experience reinforced my belief that patients can meaningfully contribute to cancer policy and research. It is the responsibility of cancer centers, policy institutions, and research centers to invite and facilitate the participation of patient advocates in their activities, but also the duty of patient organizations to equip their members with the necessary tools and guidance.

Through my years of exciting policy and research advocacy experiences at both European and national levels, I have become convinced that we, patients can significantly contribute to co-creating cancer policy and research. It’s not only the responsibility of cancer centers, policy institutions, and research centers to actively invite patient advocates and facilitate their participation in their activities but also the duty of cancer patient organizations, both national and European, to provide members with essential tools, guidance, and opportunities. Additionally, mentoring and coaching should be available for those who want to learn and contribute more.

“Can cancer patients, survivors and cancer patient organizations have other roles than that of “patient” in a cancer center? The answer is yes, cancer patients and survivors can collaborate with cancer centers in co-creating their care, education, understanding of and participation in cancer research, and this is what are going improve within the scope of the current MoU”[].

What should be the next steps towards patient centricity within the OECI network of CCCs/CCs?

The recognition by the OECI of the A&D Qualitative Standards 19-28 on patient involvement and empowerment, as core standards, i.e mandatory for accreditation. The cancer centers aiming to be OECI accredited as comprehensive cancer centers, should prove the actual implementation of those standards together with the clinical ones. Further, the compliance of cancer centers to OECI A&D standards 19-28 should be assessed by an auditing team in which patient organisations’ representatives participate.

As I conclude this article, it would be remiss not to acknowledge the wonderful, dedicated colleagues of the OECI EPIC-CARE Patients Working Group. Their enthusiasm, empathy, expertise, professionalism, and deep understanding of patient involvement in comprehensive cancer centers have been invaluable towards the launch of the WG.

Alexandre Brutti Caitriona Higgins César Gregorio Mu?oz Sánchez-Miguel @Delia Nicoara Elena Germini Emmanuelle HOCHE Karin Svedberg Kristina Isaksson Marie-France Mamzer Paulina Bravo Claudio Lombardo

Hope I have not forgotten anyone, and I would like to extend my thanks to OECI President Dr. Giovanni Apolone and Dr. Claudio Lombardo, OECI Director, for their constant support, engagement, and collaboration. I would also like to express my gratitude to Roxana Plesoianu , OECI Operations Manager, for her friendly, positive, and professional administrative support of the WG. Lastly, I want to mention and thank the FAVO team with Dr. Laura Del Campo, Director, and Ciara Pilotti, Projects Manager, for their interest in attending and being informed about the Patients WG.

The General Assembly had some nice and most welcome news, since the next Oncology Days in June 2025 will be held in my city Athens! They will be hosted by the Saint Savvas General Oncology Hospital of Athens that is currently conducting OECI accreditation of its services.

We hope that OECI will publish a report on the Conference and on the Patients WG session and share the presentations made, so that also OECI members who have not attended the conference, but also interested patient organisations, can learn more about the #OECI_EPIC_CARE_Patient_WG. (Note: you can find the presentation co-authored by Francesco de Lorenzo and me and delivered by him in the comments).

References

[1] ???46th Oncology Days - Working Together To Improve Quality And Reduce Inequalities - Helsinki-2024

https://oeci.eu/Attachments/OECI_Helsinki_2024_Final_P_03_June.pdf

[2] ??The N.1 Edition of the OECI Magazine for 2023 - Spotlights ECPC’s Contribution - https://ecpc.org/?p=90132

[3] ??Collaborating for Good Practices with Patients WG Session – Moving from Patient Involvement to Co-creation with Patients – Oncology Days 2022 – Dominique de Valeriola? - https://www.oeci.eu/Attachments/WG/D_DE%20VALERIOLA_OD_22.pdf

[4] ??The European Cancer Patient Coalition and its central role in connecting stakeholders to advance patient-centric solutions in the mission on cancer - Francesco de Lorenzo, Kathi Apostolidis – Molecular Oncology -

https://doi.org/10.1002/1878-0261.12448

[5] ??Accreditation and Designation Programme – Appendix II – OECI Qualitative Standards (page 19)

https://www.oeci.eu/Attachments/OECI_AD_MANUAL_3__2_2022.pdf

[6] ??Towards a Joint Declaration – Dominique de Valeriola – Francesco de Lorenzo – Patrick Miqueu –? ECPC AGM? - June 2016 https://ecpc.org/wp-content/uploads/2020/05/ECPC-OECI_AGM_4.pdf

?[7] The Role of Cancer Patient Organisations in Comprehensive Cancer Centers - Kathi Apostolidis - Francesco de Lorenzo - OECI Magazine - No 1 - June 2023

https://oeci.eu/Attachments/OECI_Magazine_1_2023_01.pdf

[8] EU Funded Project eSMART (Electronic Symptom Management System Remote Technology) https://www.strath.ac.uk/science/computerinformationsciences/esmart/

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