Mélanie Samson
Senior Manager, Capacity Building
Union for International Cancer Control (UICC)
Can you introduce yourself briefly and share your connection to patient engagement?
Mélanie: I’m a Senior Manager in the capacity building team at Union for International Cancer Control (UICC) and a human rights lawyer by training and a public health specialist. UICC is a union of non-profit cancer organisations, about 1200 of them worldwide and about 40% of these organisations are qualified as patient groups so we have many members who we really strive to engage and support.
From your perspective, what does a sustainable health system mean to you?
Mélanie: First, I will go back to the six World Health Organisation (WHO) building blocks of the health system and really try to link these building blocks with the patient perspective. Patient-centred systems should be at the front of what we do now for primary care and more specialised care like cancer treatments. So while a sustainable health system contains the six “building blocks” that form the WHO framework, I also think there is also the need for equity and really engaging not only patient representatives, but ‘people representatives’ which include people living with Chronic noncommunicable diseases (NCDs), people living with cancer or other diseases, that should be at the centre of any health system so when we speak about person-centric, this approach is definitely a guarantee of quality towards the strengthening of health systems for prevention, surveillance, treatment and rehabilitation. So it’s really a holistic perspective that will work as a cement between the various building blocks of the health system.
How do you think patient engagement and people engagement actually support a sustainable health system?
Mélanie: Thank you so much for this question, in fact as a human right lawyer, I will use the definition of the right to health, and we usually use the acronym of AAAQ. AAAQ is Availability, Accessibility, Acceptability and Quality and patient engagement and again, I will go beyond the patient to really population engagement and person-centred approaches are key for each one of these criteria to the right to health. Availability for essential medicines, essential products, that are responding to the needs of the patients, that are really adapted to the needs of the patients in the health system are essential. And then accessibility in rural areas, the last mile, definitely is something where the patient should have a say. Acceptability is where sometimes the health system is not so good. You should ask for satisfaction levels of patients and what they feel, sometimes the barriers in the health system is not feeling welcome in a health centre and really it’s kind of a hesitation for patients and if we don’t have the patients engaged how could we know as policymakers or regulators so I think the patient representatives in each one of decision making bodies is essential for quality of care, there is a vast literature around having a patient at the table, is making a difference not only for the patient but also the providers in the system so it’s really a virtual cycle and it’s really at the core of the human rights to health.
Are there any good examples that health systems are being engaged in health systems that you are familiar with?
Mélanie: There are many examples among our patient groups which are members at UICC. We have particularly two programmes where we work with patient groups in this respect, first, the cancer advocates programme. We have a full capacity of building programmes around advocacy for cancer prevention and control and we work with sometimes grassroots patient groups like Cancer Survivors Malaysia, which works at the local level and really tries to develop their strategy in order to make good advocacy at various levels, but also we have other examples like PAPO, the Philippine Alliance of Patient Organisations which is really well embedded in the whole ecosystem around cancer control. We know in the Philippines we have the new National Integrated Cancer Act and really patients were one of the drivers of the introduction of this law. So we can say that having the patients and caregivers, involved, can really move the needle and make transformative change for cancer control. So it’s coming from the patient themselves.
These are great examples. What more do you think can be done to enhance patient engagement in Asia?
Mélanie: From my experience, we have a programme called the patient group mentoring programme that we started in Asia-Pacific (APAC) in 2018, so we have some experience with this programme now, it’s really having a cohort of patient groups, and now we have about 25 patient groups in the region. We are trying to understand their needs really and I give a safe space between the groups themselves so they can mentor each other so that peer-to-peer aspect. Also, when we see a specific need, we try to put together a programme to address this specific need. Through programmes like CoRE, we can build up on what exists, and develop something new like patient navigation wherein some patient leaders are advanced, but sometimes they don’t feel confident enough to sit, for example, in a clinical guideline definition working group. The kind of expertise that you will need to be confident to participate in the decision-making body, maybe it could be organisations like CoRE, which could work on giving basic knowledge in, for example, epidemiology. Several times, patient leaders are volunteers and don’t have a degree in public health. So, we need to equip them through knowledge on how to use these kinds of data to advocate and really trying to support them as much as possible. To do all this, it’s really something that will be needed from all stakeholders in order to ensure that they have meaningful participation in these kinds of forums. It’s not sufficient to have a representative at the table if the representative doesn’t have confidence and doesn’t have the right knowledge or is not well prepared- it’s a missed opportunity I would say.