CLL Patient Empowerment
On behalf of ERIC (European Research Initiative on CLL), this project aimed to engage physicians and nurses, empower and support patients and caregivers, and promote co-decision making between patients and healthcare professionals through structured communication tools.
Our team designed and developed the platform www.cllempowerment.com entirely — from gathering and curating reliable information to creating educational resources, designing the site, providing ongoing support, and leading dissemination activities. The platform – launched in 2021 and with over 16.000 visitors so far- offers scientifically accurate yet accessible information tailored to each stage of the CLL journey, while also providing tools and training materials to enhance communication in clinical practice.
We worked closely with patient organizations to ensure materials addressed real needs, bridging gaps in communication and offering both educational and psychological support to people living with CLL and their families.
Expansion I – Personas & Patient Journeys
This expansion illustrated the diverse experiences of CLL patients through “personas,” showcasing different journeys across milestones such as diagnosis, watch & wait, treatment initiation, relapse, and participation in clinical trials. Podcasts, interviews, and videos were created to bring these journeys to life.
Expansion II – Infographic Videos
In a further expansion, we designed a series of audiovisual and infographic videos explaining treatment options and providing accessible information on CLL biomarkers. These materials simplified complex medical concepts and made them easier to understand for patients, caregivers, and clinicians alike.
Published work for this project
Karamanidou, C., Dimopoulos, K. (2016) Greek health professionals’ perceptions of the HPV vaccine, state policy recommendations and their own role with regards to communication of relevant health information. BMC in Public Health. 16:467.
Karamanidou, C., Stamatopoulos, K., Xochelli, A. (2019) Approaching empowerment holistically: are physicians willing and able? The case of Hematological Malignancies. International Journal of Reliable and Quality E-Healthcare, 8(1)
Karamanidou, C., Xochelli, A., Ghia, P., & Stamatopoulos, K. (2021). How do hematologists communicate with patients suffering from chronic lymphocytic leukemia? Insights from the ERIC pilot study in greece. European Journal of Health Communication, 2(3), 110-135.
Karamanidou, C., Xochelli, A., Papaioannou, M., Moysiadis, T., Scarfo, L., Mattsson, M., … & Stamatopoulos, K. (2021). Assessing Patients’ Knowledge on Chronic Lymphocytic Leukemia: Validation of the ERIC CLL Knowledge Questionnaire in Greece. HemaSphere, 5(3).
Stamatopoulos, K., Pavlova, S., Al‐Sawaf, O., Chatzikonstantinou, T., Karamanidou, C., Gaidano, G., … & Rosenquist, R. (2024). Realizing precision medicine in chronic lymphocytic leukemia: Remaining challenges and potential opportunities. HemaSphere, 8(7), e113.
Vrontaras, N., Koulierakis, G., Kyrou, D., Kapetanakis, A., Xochelli, A., Ghia, P., Stamatopoulos, K., Karamanidou, C., & ERIC, the European Research Initiative on Chronic Lymphocytic Leukemia (CLL) (2025). More than “hematology”: a qualitative study on the experience of hematologists treating people with blood cancer in Greece. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 33(4), 307. https://doi.org/10.1007/s00520-025-09320-0
Vrontaras, N., Kyrou, D., Kapetanakis, A., Tsakona, D., Karamanidou, C., Scarfò, L., … & Stamatopoulos, K. (2022). PB2362: Best practices on empowering and involving patients living with hematological malignancies on the development of novel patient -reported outcome measures. HemaSphere, 6(Suppl), 2231-2232.
Xochelli, A., Karamanidou, C., Stamatopoulos, K. (2019) Patient involvement in health care. Different terms same concept? International Journal of Reliable and Quality E-Healthcare, 8(1)