Tomáš Kepak & Kateřina Kepakova from ICRC in the Czech Republica are coordinating the management of ethics issues across the project.

 

Please introduce yourself and share with us why you joined PanCareFollowUp.

We are a team from university hospitals in Brno, the Czech Republic. We are a twin brother and sister, Tomáš and Kateřina. Tomáš is a pediatric oncologist from the Children‘s Hospital of the University Hospital Brno, a founder of a follow-up clinic for childhood cancer survivors at St. Anne‘s University Hospital in Brno (FNUSA-ICRC) and a late-effects specialist there. His long-term interests as clinician and researcher are in the quality of life of survivors. Kateřina is a research projects coordinator at the same institutions. Tomáš is a founding member of the PanCare society and Kateřina has joined PanCare as a member about six years ago.

We joined PanCareFollowUp to represent one of the data collection clinics where PanCareFollowUp Care Intervention model will be piloted. We joined the project because it stands for the same principles and has the same objectives that we have: continuous effort to improve the quality of care for childhood cancer survivors, real partnership between healthcare professionals and survivors, sharing of best-practice across Europe, harmonization of procedures across Europe, implementation of treatment summary and survivorship care plan into routine practice.

Explain your work in PanCareFollowUp shortly.

The project is divided into work packages (WP). The role of WP8  is to oversee that all requirements on ethics in health research are met in all the research WPs of PanCareFollowUp. It checks that the teams running the different sub-studies of PanCareFollowUp have the necessary ethics approvals in place before they start their studies and that the study participants‘ data are protected and kept confidential and that their rights as study subjects are respected and duly protected throughout the conduct of PanCareFollowUp. This includes proper information of the participants on the study, making sure they know where to turn to with questions or complaints, reassuring them their participation is 100% voluntary and many other aspects.

Why do you think PanCareFollowUp is an important project?

PanCareFollowUp has the ambition to initiate a pan-European change of the whole system of care for cancer survivors. It‘s very systematic in its approach and tries to create a truly complex and thought-through model of care and educates physicians to listen to survivors as much as possible.

What makes this project unique for you?

The same things as those that make the project important!

In addition, the ambition to measure economic efficiency of the model of care is very unique and may bring novel data that are not usually collected in health-related research projects.

What do you hope this project will achieve?

We hope it will succeed in developing an efficient complex of recommendations and guidelines that will provide a clear guide for personalized care for survivors.

We hope that the project will win survivors‘ trust and that the survivors will embrace it as helpful and friendly and possibly provide feedback on how to further improve the model for use in practice.

We hope the project will collect convincing arguments about the advantages of the model of care in order to get on its side hospital managers and healthcare professionals from late effects clinics – both those involved in the project implementation and other ones, so that it‘s realistic that the model will be adopted by many clinics in the future.

What’s the biggest challenge of your WP?

To ensure that what is written on paper is also duly translated in practice. We will see into that!

What’s the most fun thing in your WP?

It feels good to be able to help serve as a guardian of the rights of the participating survivors.

Hope we will witness a lot of joy and sense of satisfaction among survivors and have fun with them during the PanCareFollowUp project implementation!

What’s the most important benefit of your WP for survivors?

WP8 serves as a guarantee for survivors that the consortium gives due attention to ensuring that survivors’ rights as research subjects are protected and that their privacy and confidentiality of their data is respected.

What else do we need to know about your WP or is there anything else you want to share?

You have covered all important aspects with your questions. Thank you for this initiative!

We do look forward to staying invisible as WP8 throughout the project, which means there are no ethics issues raised by the participating survivors!