Sharing data is the drug that comes from patients

Q&A: Peter Kapitein, President and Patient Advocate of Inspire2Live and an active EPEMED member on the panel of the July High Level European conference in Luxembourg

Peter Kapitein is President and Patient Advocate of Inspire2Live and an active EPEMED member. Since 2005, Peter has lived with cancer and shown others that cancer does not have to be a death sentence, but can also be the start of a new and richer life, full of opportunities. That’s on this absolute belief that he initiated Inspire2live, an international cancer patient advocacy group that empowers patients and their loved ones in converting a sense of powerlessness into a strength.

Peter stands at the forefront of shaping up a transformative european healthcare system where patients are part of a healthcare team. As a recognized international expert and speaker, he was a panelist  at the European conference “Making Access to Personalised Medicine a Reality for Patients” held in Luxembourg on the 8th of July 2015 and is part of the EPEMED steering committee working on HTA of complementary diagnostics with OHE. Peter took time from his schedule to speak with EPEMED’s executive director Emmanuelle Benzimra about his engagement and how letting patients decide what they want to do with their data form a game changer in the future of personalised medicine.

EB: The Luxembourg EU presidency established Personalised Medicine as one of its health policy priorities. You intervened in July at the high-level European conference as a panellist relaying the patients’ voice and the topic of patients' informed consent. Why is this subject important?

PK: We believe that we need the patient to solve the problems we have to deal with when it comes to cancer. It’s the most complex disease we know of and we’ve been looking for solutions for decades, probably for centuries. We’ve never succeeded. Yes there are results in particular fields of cancer but looking at pancreatic cancer, lung cancer and brain tumour, the result is zero. Metastasized cancers have the same results; patients are still dying. And yes; in some fields (personalised medicine, immunotherapy) there are promises, but so far this is not yet available for all the patients.

We think it’s time to bring in the most important stakeholder to facilitate the solution: the patient. Only the patient knows what’s really important to do and only the patient can contribute what’s necessary: one’s data. We need to know what’s going on in one’s body, in one’s tumour. And by bringing together the data of many patients; hundreds, thousands, perhaps millions; we can look for the similarities, combinations and differences. Then we can solve problems, cure patients, and prevent them from getting cancer.

For this, we need to inform patients and have them donate their data. A major issue at the moment is that, we as patients don’t even always have access ourselves to our own data. Nonetheless, we are the owners of our data. What we've done in the Netherlands is that we've changed the way to approach data access and sharing. For researchers, for clinicians, for everyone else, it's a problem to give data for research. But I, as a patient, can give my data; I can go into the hospital give my dossier, walk to a copier, make 10-100 copies and spread it around, and then one can see what my condition is. So that’s why we consider that it is the patient’s sole privilege to donate his or her data. We do not want the governments to tell us what to do. Our program – that’s my data, use my data – is not a question but a demand that we intend to extend across Europe. Law backgrounds and settings put a pressure which blurs the positive health effects over health data sharing and do interfere with a fair and holistic decision making process. The perspective can be changed from privacy to public interest as it’s a question of public interest to use health data for better reason, better treatment, and better quality of life.

Patients need their data to be used to progress science and access to new treatments. Every patient can help, no matter how sick they are; it’s the most important thing to contribute with and it’s easy to do. Sharing data is the drug that comes from patients! Of course, it goes without saying that good informed consents is needed for implementation.

EB: Informed consent fits in the broader topic of informed decision-making and implies multi-disciplinary involvements to formulate more effective health systems at all levels. In your view, what would be an effective patient participation in this wide-ranging challenge?

PK: It’s all about the best cancer care and the access to the best cancer care. That’s our purpose and, if we succeed, patients will benefit the most of it, as it should be.

When we, as a patient advocacy organization, look at the best cancer care, we take into consideration:
- Reference of the patient to the hospital.

- Diagnostics based on:

  • The most modern techniques of DNA sequencing or other outstanding molecular techniques
  • The best imaging techniques to locate the tumour and know the size of it
  • The story, experiences and opinion of the patient and The interpretation of all of this in the best multi-disciplinary team.

- Based on this diagnosis, the best treatment can be determined (in the long term the best is always the most efficient).

- After care

And in all of these aspects, it’s about the patient and her loved ones.

When we forget the patient in this process, we are working with factual data that’s not related to a human being. It is that human being who can tell you what he or she feels before, during and after the treatment. This is not restricted to the feeling in her body when it’s about the chemo but also for the response to this treatment. Medical facts can tell us that the patient is doing all right. But looking into the bed we see a dead sick woman or man.

Making the patient part of the team (not in the middle of the team but the most important decision maker) will improve the quality of the work done by the medical staff. And moreover; being part of that team makes it easier to ask difficult questions that need an answer before the right decision is taken. What about asking for more tissue, more blood or another PET-MRI, how stressful it can be.

And finally; if we’re heading towards personalized medicine we better make it personal and discuss all the things that matters with that person; the patient.

EB: Can you expand on your favourite tag line, "Realism is the biggest enemy of hope!”?

PK: One of our critical success factors is ‘Daring to dream’. For cancer patients, hope is life. We dare to set our sights on a goal and to strive towards it with all our energy and conviction. No matter how unrealistic it may seem at first, we are committed to making the impossible a reality.

Without hope there is no life. And too often patients are confronted with the phrase: ‘Be realistic’. Well, we’d rather not. Because if we are, we die. It’s our life that’s at stake. We challenge scientists not to do their best as it’s simply isn’t enough. Do more, and if you tell us that you’re dead tired after an 80 hours working week, we will tell you that we would love it to be sick for 80 hours a week and no more.

We will tell the scientists: ‘We depend on your brain. We rely on your Brilliance, your Creativity, Your Endurance and your Perseverance.’ Being realistic implies that we let you get away with reality. And reality means 10 million dead patients every year. That’s every 3 seconds one dying patient. And with that amount of dead patients there’s no hope. There’s no life. And always remember; one dead patient means that there are at least 10 other people that feel sorrow.

Realism is the biggest enemy of hope. Hope = Life! You better choose life.