World Cancer Day - The Perspective of A Cancer Survivor

I am one of those privileged people who survived their cancer, and luckily, our number is growing. Over the past eight years, ever since I was declared free of cancer, I have invested my time and energy to the improvement of the situation of patients. I have been part of a large variety of organisations, advisory boards, roundtables, conferences, congresses and policy meetings, both at international level, at national level in Belgium, and occasionally also in other Member States.

I will make two major observations from all this, and then suggest a new way forward.

First, we are making progress, primarily at the level of technology and infrastructure. We have seen an incredible move forward at the scientific level, with new insights and knowledge into the mechanism of action in cancer, resulting also in novel technologies such as immunotherapies, cell & gene therapy, CAR-T therapy, but also new genetic and molecular tests, AI in diagnosis, new imaging techniques, new surgery techniques with robotics and augmented reality as the more spectacular ones, ... Frankly speaking, it all is spectacular and these novelties have their impact on our cancer outcomes. And don't get me wrong, we cannot thank the researchers who developed all these technologies enough. ?The challenge now is to make all these technologies available everywhere and in a sustainable way.

The second observation is that the patient perspective is lacking in our cancer policies. If the voice of the patient was stronger in our healthcare system, we would probably focus on completely other things as well, primarily how our healthcare system is organised. In my opinion, this is the low hanging fruit to significantly increase outcomes and quality of life of patients. It is illustrated by the limited data we have to look at healthcare systems effectiveness and efficiency. If you would capture all the patient data by type of cancer from early symptoms to end of treatment, you would observe the following: lack of ambitious screening programmes, late detection and many misdiagnoses, a long time between diagnosis and the beginning of the treatment, lack of information provided to the patient about treatment consequences, lack of support for patients about the non-medical aspects of the disease and treatment, lack of public and transparent outcomes data by hospital so that the patient can actually choose where to be treated (this is also part of evidence-based medicine). In Belgium, the mortality of rectum cancer thirty days after surgery differs with factor 13 between the best and the worst hospital. Five-year survivorship can vary with as much as 35 percentage points among the best and the worst hospital. These differences are not the result of access or of the availability of technology. These differences are only the result of the organisation of care. We hear stories of cancer patients whose GP never even asked about cancer cases in the family, about patients who were never informed about the impact of chemotherapy on fertility, or of the possible need for vaginal reconstruction after rectum surgery, or about the importance of nutrition after colon surgery or during chemotherapy, or about the lack of detection of anxiety and distress, or about the lack of support to navigate the healthcare system and find specialised help to deal with long term consequences (speech therapy, living with stoma, psychological support, physiotherapy, ...), we hear about complications as a result of incorrect information of patients, etc.

The only way to identify the way forward in dealing with these issues, is to fully integrate the patient perspective in the way healthcare is organised. It's about us, not about the technology or the money. We know what is going wrong, because we experienced it. It is only by integrating all the experiences and patient outcomes in a robust and systematic way that we will be able to change the system and make it more performing.

There are a few conditions to achieve this. ?

1. We need patient organisations for each type of cancer or group of cancer, who can offer a set of basic support services to patients, gather the collective intelligence of patients, conduct surveys, share good practices, and defend the interests of patients at policy level.
2. We need public funding of patient organisations for the services they offer in our healthcare system. The current system of charities and the massive work of volunteers is not sustainable, and it hampers the growth into professional organisations.
3. Patient organisations should get a formal role in our health policy system, with co-decision power.
4. We need a plan for each type of cancer. Even if there are some commonalities, each type of cancer requires different policy measures, a different medical approach and different key performance indicators. There is no one size fits all.
5. We need a real-time statistical apparatus with key performance indicators, and best practice outcomes along the patient pathway for each type of cancer.
6. We need an observatory by type of cancer, consisting of specialists, patient organisations and policy-makers to identify the indicators, to identify best practices, and to adapt the plan annually based on the latest data.
7. We need a full health economic analysis of all the aspects related to the treatment of each type of cancer, indicating the cost of treatment, of informal care, of morbidity (including absense from work or return to work), mortality.

The cost of organising all this is limited compared to the annual total cost of cancer of 200 billion euro in Europe. I am convinced that this more granular and patient-driven approach will save lives and save a lot of money. It does not require major changes in the way our healthcare system is organised. It just adds a perspective, one that has been lacking so far.

In order to achieve sustainable results, we need both innovative technology and we need the structured and systematic voice of the patient.

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