We are a patient-driven organisation, but what does that mean?
We say that we put the patient at the centre of everything that we do. That we are a patient-driven organisation. But what does it mean? How do we keep the promise we make?
For a very long time, patients have been merely seen as recipients of care. The patient perspective has traditionally only been viewed through the lens of the physician. In the past few decades however, we have seen a slow shift in our society from a pure health care professional centric approach towards a more patient-centric one.
A similar shift has been seen in the product development and approval process of new therapies. Patients are becoming more important in the strategy of drug developers. Patient centricity has recently been promoted by the drug regulators too, forcing companies to set up patient participation initiatives. Companies realise that they have to change and now listen to patient demand when innovating.
And, of course many non-profit organisations, like the Anticancer Fund, and patient advocacy groups are now here to put patient needs in the spotlights, hammering on the urge of thinking at the patient first, and not only at the pursuit of profit.
But this is not an easy job, as these needs of patients are quite diverse and the question remains who could and should contribute to fulfilling these needs? Moreover, there is no single definition of patient-centricity, nor a standard approach. However, putting the patient first is definitely part of our mission. Let me explain.
Patient centricity in the research we support
Clinical trials are voluntary research studies conducted in people and designed to answer specific questions about the safety or effectiveness of drugs, vaccines, other therapies, or new ways of using existing treatments. So, it should be obvious that the patient is at the centre, shouldn't it? Because we are dealing with people here. A clinical research that is patient-centred is respectful to patient's values, beliefs, preferences and needs, and it generates meaningful evidence that will allow patients to make better informed health and healthcare decisions. A mouthful. Does the Anticancer Fund tick all the boxes when it is supporting a clinical trial? We try to, but we don’t. Because patient engagement may happen at different levels, depending on the research question being asked, and we are not necessarily involved in all stages.
Patients should be engaged in defining the clinical research questions. When pressing questions have already been defined or are obvious, like life and death, we still want the investigators we work with to take into account the patient in the design of the study and in all practical aspects. This will improve the overall experience of the participation to the clinical trial, will likely get more patients to join and to hold on to the treatment and, at the end, deliver better outcomes.
Putting patients first also means that we ensure that research with great promise for patients gets funded. There are many areas of research that have no particular interest for commercial players, but we fund this ‘outside-the-box’ research, as we call it, to give patients more treatment options.
Patient centricity in how we help cancer patients
Patient centred care is about involving patients as part of the health-care team. For people with cancer, to fully be able to participate in a shared decision-making process with their doctors and caregivers, they have to receive reliable and understandable information about their disease and about their treatment options. But it’s not always easy to find their way in the complex maze of information. Therefore the Anticancer Fund has set up My Cancer Navigator, to help patients and their relatives.
Patient centred care is about focusing care on the needs of individual patients and that’s exactly what we do with our personalised service for people with cancer, My Cancer Navigator. We listen to the stories and questions of people with cancer, and give the answers adapted to their type of cancer and personal expectations, with the purpose that they better engage with their health-care team.
In order to make informed choices, people must not only have access to reliable information but also to their own health data. That’s why it is not a surprise that one of the trends in patient centricity is digitalisation. Wearables, sensors and mobile technologies capture data, allowing patients to follow their disease progress or their participation in a clinical trial through smartphones. However, no matter how efficient, how mechanised or digitised or logical the system is going forward, we believe we also need to keep the care for the patient human. The human, personalised factor is one of the driving forces of My Cancer Navigator.
Although the vast majority of cancer patients want to be informed about their illness, it is also recognised that patients vary in how much information they want and that this may change during their illness. To us, respecting the will of patients is also a form of patient centred care.
Patient centricity in our policy work
We need major changes in the research ‘system’, as better comparators, endpoints, platform trails, comparative effectiveness for instance, to assure that patients get access to the best treatment. Today the availability of drugs is fully driven by commerce and regulators/governments with no impact of civil societies. We encourage policymakers, especially at European level, to evolve from a commercial push system to a societal pull system.
Patient centricity in cancer also means that decision-makers should recognise that cancer research is not only about drugs, but that they should focus on cancer treatments as a whole and pay attention to quality surgery and radiotherapy equally. We advocate very hard for this multi-disciplinary vision, for the benefit of the patient.
From words to action
So, is the Anticancer Fund a patient-driven organisation? Patient centricity starts with developing accessible information, services and support that meet the needs of patients. Next is reducing inconvenience wherever possible. Paying attention to details that minimise burden to patients increases patient sentiment and therefore willingness to continue their treatment. Third is ensuring that the research studies will eventually generate outcomes that are truly relevant for the patient. We keep that in mind when we decide to fund a trial, when we support people with cancer and when we connect with decision-makers. For sure!