Thank you!

I want to thank you all individually for the support and the trust that you have in me, or just for your curiosity about what things will be written next. I'm not sure 5,000 contacts is a lot (and definitely less than many others), but it's a kind of milestone moment.

Who I am is not so important, but I guess that it matters more what I stand for as a patient advocate.

Several times a week I am invited to speak about the perspective of patients in our healthcare system. Usually I am confronted with sentiments of sympathy but also disbelief, a seeming paradox, but a real one. There are more paradoxes to put my finger on.

Ever since I was declared free of cancer, in 2016, I have given my everything as a volunteer to advocate for the cause of a better integration of the patient perspective in the way our healthcare is organised, with Digestive Cancers Europe, in the European Cancer Organisation, with the Patient Expert Center, and now also as Board Member of the Alzheimer Leage in Flanders.

Despite all the education, despite all the experience, it is impossible for a healthcare provider to even understand what it means to be a patient.

Even the people with the best intentions, and the strongest level of support have a real hard time to understand the patient perspective, to look at healthcare with the eyes of the patient in a more holistic way. Despite all the education, despite all the experience, it is impossible for a healthcare provider to even understand what it means to be a patient. You can understand it in a very rational way: you can understand that a change of self-image, a growing sense of uncertainty (outcome, relationship, job, friends, ...), the disappearance of long term perspectives, the physical consequences and pain, the diminished value perception by society, and so many more issues are part of the patient's life, but you cannot understand what it actually means until you experience it, which I hope you won't. I worked in the pharmaceutical industry for many years and was fully aware of what 'fatigue' meant for patients with cancer or other diseases, but I never realised the devastating energy-draining paralysing weight it could be until I sat on my couch exhausted and almost unable to force myself to get up. Healthcare professionals can make assumptions about what it may mean for patients, but only rationally. The only way out of this for medical practice is to set up systems in which the voice of the patient is embedded in the decision-making, through models of Shared Decision-Making, surveys, listening moments, narrative medicine, diaries, etc.

Even if the systems seems well-organised from the healthcare perspective, it is clearly still far from being finished from the patient perspectives.

Secondly, our healthcare systems are organised by making technology and healthcare performances available to citizens. The whole system is primarily focused on the financing of the technology and the health services. In our European system of universal coverage, the system is very generous and built on solidarity. The paradox here is that while being very social in its solidarity principle, it is also extremely liberal - in the European sense - from a patient perspective. The individual patient has to act, choose, use treatments, understand the context, struggle with unanswered questions, question decisions, ask for second opinions at best. It is good to have this level of individual freedom, but the downside of that system is that many patients are treated suboptimally, because they do not understand what is expected, they lack health literacy, they get lost in the system, they do not get access to all the services and products they are entitled to, they are basically left to their own devices. Some patients manage to get success, but many do not. This leads to a lot of waste - a waste of life and a waste of money - that could have been prevented in the first place. That is why it is critically important that the individual patient is coached, accompanied, supported by well-organised and funded patient organisations who know the disease, how know which patients needs which support at which stage in the disease.

We have a lot of input data but very little outcomes data, which gives the impression that budgets are more important than people

Third, this also means that from a health policy perpective this patient view should be taken into account. Many people look surprised when I tell them that despite our wonderful healthcare system, that we do not have any plans for any disease. We do not know how many patients with disease X feel sufficiently informed. We do not know to how many hospitals and specialists the patient in disease X had to go before receiving the correct diagnosis. We do not know how many patients with disease X have long term physical consequence as a result of their operation. We do not know how many patients have broken relationships as a result of their treatment. We do not know how many patients lost their job as a result of their disease. We do not know how many cancer patients died from sepsis. We do not know how many cancer patients die from malnutrition. We have data on all in the input figures: the cost of diagnostics, the cost of surgery, the cost of medicines, the cost of physiotherapy, etc, but we have no data on patient outcomes, on patient quality of life, on financial hardship, on social isolation, ... It's as if only the money matters. Yet it also leads to a lot of waste. For instance, you can treat a rectum cancer patient with surgery, but if the surgery is not done properly, the patient will be incontinent and will require follow-up surgery and other treatments. If a prostate cancer patient has erectile dysfunction after surgery, the patient will require additional support, revalidation and technical tools. For the health budget, these are all additional costs which could have been prevented in the first place, but are all below the radar of the system. They are calculated and remunerated as 'performances' while they should have been avoided in the first place.

By having a plan for every disease, with key performance indicators (KPI) co-decided by patients and by having disease-specific observatories that would annually review the plans, we can actually have a real systems-approach, with the right knowledge and actions to increase the effectiveness and efficiency of the treatment.

In that sense our system is like a company that is led by the suppliers of the services. All the input data are known and important and very valuable because it's all about the revenue of the suppliers. The outcomes data remain a large mystery because they are deemed irrelevant to measure. It's as if the company does not know or even want to know which products sells well by which salesperson in which region and with which levels of satisfaction. The client is absent in the mindset and reasoning of the decision-makers. We often see scientific and medical articles mentioning survivorship data from 2020, but imagine a company that presents it's annual financial report to the shareholders with data from four years ago ... How could that work? Yet for patients and their diseases this is the case.

I presented our vision for the future in one of my earlier articles, including in this interview for PWC, highlighting the importance of having a 360° perspective in healthcare in which the medical and patient perspective have equal value, both at individual and collective levels.

This is not rocket science. It just requires to formalise the fundamental right of "no decision about us without us". And the "system" has to make sure that patient organisations are sufficiently well-organised so that they can play their valuable role to the full. This can only be done if they are funded in line with the value they generate. Patients should not be silenced. Patient organisations should not be starved to the level of patient volunteers investing their free time to advance the situation of other patients. That is not acceptable. Patient organisations should be publicly financed so that they can have the right level of staff and the capacity to deal with all the many decisions, from early research over treatment to palliative care, where the perspective of the patient is absolutely crucial.

Our mission will not be finished until we get there.

PS - I add the link to the PWC interview here: https://www.pwc.be/en/news-publications/2023/towards-a-360-approach-to-healthcare.html