This month’s patient spotlight is on Marjo Forsblom from Finland. Marjo is a member of the Patient/Public Advisory Board (PPAB) for OPTIMA, a new EU project that is using artificial intelligence (AI) to improve care for patients with lung, prostate and breast cancer.
I’m 54 years old. I’m a lung cancer patient, patient advocate and active member of a peer support group for newly diagnosed lung cancer patients. Apart from that, I’m a dog owner, music lover and an optimistic person, focusing on the positive aspects of life.
Although I love to live in a city, where everything is close by, I’m a nature lover. So whenever possible, I love to take walks along the shoreline, or go to the forest or somewhere where there’s fresh air.
I’m currently working part time as a development manager and plan to continue developing myself and my skills too.
I have been relatively healthy throughout my life and have no history of smoking or other known risk factors for lung cancer. But I developed a persistent cough and heartburn. Over-the-counter medications did not give any relief, so I sought professional medical help. And all of a sudden my health status changed from healthy to incurable overnight, as in August 2020 I was diagnosed with metastatic non-small-cell lung cancer (NSCLC) with ALK-positive mutation.
After the initial shock, I realised I had to educate myself and learn as much as possible about my condition, so that I can be involved in the process and actively participate in the discussions and the decisions along my path of care. I allow the health care professionals to do what they do best, but I want to have a say in ‘living with lung cancer’.
I’m currently doing fairly well, enjoying my life one day at a time. The cancer has been staying stable with targeted therapy that can be taken as daily oral medication. But as lung cancer is likely to spread to the brain and other organs, I’m having scans every 3 months to monitor the situation.
It was clear from the very beginning that I wanted to network both locally in Finland and also globally with different lung cancer groups. This led me to become an executive board member of Lung Cancer Europe (LuCE), an umbrella organisation of lung cancer groups and associations throughout Europe. LuCE is part of the ELF Patient Organisation Network.
LuCE’s mission is that all Europeans impacted by lung cancer will have equal access to optimal care, so that they have the best possible outcomes and quality of life. To me, this is very much in line with what the OPTIMA project is all about: using data and AI to speed up research and the development of guidelines to better support shared decision making by clinicians and patients. I’m extremely happy to have been given the possibility to put my experience, thoughts and enthusiasm to good use together with my fellow cancer patients and patient representatives Conchi, Seamus, Erik and Marzia.
The meeting was the first time the OPTIMA project members had been able to meet face-to-face. Our PPAB members kicked off the meeting with personal stories that underlined the whole rationale behind the project. Many attendees said it gave them a huge motivation boost to really understand the concrete link between the project and our real-world life.
For me, it was amazing to hear from the experts and consortium members and to see what has been accomplished already by the project. I really felt the positive energy in the meeting room and the good vibe continued throughout the informal networking event. Although it was acknowledged that there will be challenges and potential roadblocks ahead, everyone seems willing to share resources, tools and data and work in close collaboration to tackle all the problems as they arise. There is a strong sense of professional significance interlinked in the project.
This is a huge groundbreaking project, with great significance especially to us patients. I’m hoping we can get as many countries, universities, healthcare service providers and other stakeholders interested and involved in the project at some point. This is a concrete example of how a group of devoted people and organisations can invest their skills, time and resources for a common cause. We can create a better world bit by bit and phase by phase.
I’m really looking forward to how digitalisation and the use of data and artificial intelligence will enable everyone in the healthcare ecosystem to understand and develop the big picture. Patients can be more involved in their diagnosis and personalised treatment, clinicians will get help to process a vast amount of constantly evolving information, and pharmaceutical companies and regulators will be able to understand and use the real-world data and facts to develop new drugs and medical devices. And the governments and national health service providers can use their resources in the most effective and efficient way.
OPTIMA is funded through the IMI2 Joint Undertaking and is listed under grant agreement No. 101034347. IMI2 receives support from the European Union’s Horizon 2020 research and innovation programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA). IMI supports collaborative research projects and builds networks of industrial and academic experts in order to boost pharmaceutical innovation in Europe.
The views communicated within are those of OPTIMA. Neither the IMI nor the European Union, EFPIA, or any Associated Partners are responsible for any use that may be made of the information contained herein.
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