Ovarian cancer, Olivia, and the OCC – part one
Following the European Society of Gynaecological Oncology (ESGO) 2022 congress, pharmaphorum spoke with experts from among the Ovarian Cancer Commitment (OCC) founding partners – ESGO, the European Network of Gynaecological Cancer Advocacy Groups (ENGAGe), and AstraZeneca – all of which had been involved in the development of Olivia: a new digital and dedicated support resource for people affected by ovarian cancer through all stages of the disease.
Olivia has been reviewed and validated by both medical experts and ovarian cancer patients themselves. In this article is the conversation pharmaphorum had with Professor Nicole Concin, ESGO president, gynaecological oncologist, and professor for translational research in gynaecological oncology, at Medizinische Universität Innsbruck, Austria. It became clear during our discussions that a passion and joint compassion had driven the project, from seeds of thought to Olivia’s fruition.
Often, quality of life for a person living with ovarian cancer is severely compromised by emotional and psychosocial issues. These can include not only personal, but family distress at initial diagnosis, alongside fear about the future. Olivia aims to provide comprehensive everyday support from diagnosis to treatment and ongoing care. Additionally, patients can turn to Olivia to search for information at any time, providing support and a wide-ranging guide which can be relied upon as and when needed.
The resources provided by Olivia include an interactive ovarian cancer pathway and guidance on diagnosis and living with ovarian cancer, as well as stories from individuals diagnosed with the disease, a directory of patient organisations, and a glossary of medical terms translated to accessible wording, providing support for everyone, including caregivers.
A gynaecological oncologist perspective
Asking Professor Nicole Concin about the scientific development process behind Olivia and the real-world benefit of this resource, Professor Concin told pharmaphorum that the system provides “incredible support” for patients and their families, as well as the whole support network surrounding them.
“[For patients] it is important to learn about what they will face in the future regarding treatment, surgery, and chemotherapy, but it is also important to address the effect of this disease on various aspects of their lives,” she said. “The effect on the family, on their work, on fertility, on menopause, on their partners is very important. Olivia is a comprehensive single, digital source of information integrating all these important aspects of the disease.”
Concin particularly wanted to stress Olivia’s reliability.
“The reliability comes from the fact that this was developed by healthcare professionals, experts in this field, so this really is reliable information,” she explained. “The fact that it was developed with patients and patient advocacy groups guarantees that there is really relevant information for the patients. This combination [is what] makes this information so unique.”
This patient input comes from a diverse foundation of experience, as well, from early to late stages of the disease.
“It is an interactive tool,” Professor Concin said. “Olivia covers the whole journey, and the important thing is that the patient can always come back to the source of information, always at the actual time point of the journey, to access tailored information […] The patient can go back anytime, anywhere, as often as needed and always find what is relevant at [that] moment.”
The OCC and ambitious oncological goals
Professor Concin also told pharmaphorum a bit more about the Ovarian Cancer Commitment, a new initiative only recently launched in 2022.
“The [OCC] is a real partnership of different stakeholders,” she said. “It’s important to bring together these different stakeholders in order to drive and deliver innovation in the field of ovarian cancer for the benefit of people diagnosed and living with ovarian cancer. [It] is an open platform, so it’s open for more and new stakeholders.”
“Currently, the [OCC] is built by three stakeholders,” Professor Concin continued. “The ESGO, the European Society of Gynae-Oncology, the ENGAGe, which is the European umbrella for all patient advocacy groups, and AstraZeneca […] Together, we have the goal, a very ambitious goal, actually, to improve the quality of life of ovarian cancer patients, and to improve survival [rates] of ovarian cancer patients.”
“Our goal is to launch one or two projects every year that work towards this aim of quality-of-life improvement and survival improvement,” Professor Concin explained. “Olivia is the first project within this Ovarian Cancer Commitment.”
“Information calms,” she said. “There is a high need for information if you are diagnosed with cancer.”
The impact of COVID on Olivia
On a personal note, discussing her own professional involvement with ovarian cancer, and the added impetus to become involved with Olivia as a healthcare practitioner, Professor Concin referred to the tipping point of the pandemic within the hospital setting.
“What I experienced the past two years,” she explained, “are the difficulties that we are facing with COVID restrictions, particularly for cancer patients. If you imagine, these are people that are newly diagnosed with ovarian cancer and then you talk to this person and tell them about the disease, what to expect - it is huge information, huge.”
“A cancer diagnosis… It’s overwhelming, it’s confusing, a lot of fear,” Professor Concin continued. “What helped a bit in the past was that the cancer patients were accompanied by family, by their husband, by their wife, by their children, by a close person, a friend. Now, in COVID times, we cannot allow this anymore. The patients are there alone, and there is a flood of information, and there is very little time to process this information. Sometimes, we connect with the family on the phone, so they are there via the phone, but the personal, direct support by family surrounding the patient is gone since COVID.”
Unfortunately, because of the nature of fear and resultant confusion, a patient in such a situation will most times remember only half of the information provided them, or not even that much. Conversely, someone close being present would remain calmer and be able to remember more for the patient. And that is why Olivia is so important.
“It’s extremely valuable to have a reliable, solid, comprehensive information tool for the patients and the family, particularly now, in this COVID time with restricted personal contact,” said Professor Concin. “The high need for an information platform like this was there without COVID, but with COVID, it becomes even more valuable. Now, it underlines and further increases the value of this information platform.”
Professor Concin concluded with further mention of the importance of including real-life patient stories within Olivia.
“There are people with ovarian cancer [who] share their individual stories, which can be inspiring and [comforts] patients that they are not alone, and they see others manage to live with this disease or overcome it,” she said.
It is such inspiring patient stories that will be pharmaphorum’s focus in the second part of this feature.