As a doctor, what happens after you’ve diagnosed and cared for a patient? How far does the care extend? Who takes responsibility for the patient beyond what is seen on a medical chart? How much attention is given by the nurses between doctor visits, that recognise and encourage the patient to keep fighting? What are we, as stakeholders today, doing to turn something like emotional recognition into a productive solution for both us and patients?
Modern patient needs are treated as mutually exclusive to our own, and with the way traditional healthcare systems are set, we need a radical change. The healthcare industry has seen a shortage in medical labour and a communication gap between psychological and physical support.
Take hypothetical Patient X, as an example. Patient X has zero medical professional or academic background and is diagnosed with cancer. Already at the first post-diagnosis meeting, the Doctor gives a medical description of their condition. What can happen here is that the patient meets a lack of fundamental understanding and empathy in regards to how the diagnosis is life-changing. An understanding of the human condition is easily lost. This scenario is not exclusive to the diagnosis phase. It occurs in R&D, policy making and hospital management as well. Because of this, the patient’s course of care is influenced.
What if there was a solution that could lighten the navigation, psychological and medical burden inflicted on patients through a difficult time like this simpler?
“I believe that contributing to a platform and network for patients is like contributing to something bigger than a disease or even yourself…” Fabian Bolin on WarOnCancer.
What if businesses and hospitals could learn to adopt this approach in management? Is there a sustainable and authentic way to do this?
Being truly and socially authentic comes down to what state of development your company is in. For example, an early-stage company has the flexibility to re-build its DNA or dedicate its resources to a social cause. On the other end, a company that is arguably established should look to join causes which optimise their own resources rather than leveraging. The Co-founders of WarOnCancer Sebastian Hermelin and Fabian Bolin have understood this and built a platform with a clear social goal in mind.
The digital health platform aims at enhancing patient self-management, research and treatment programs. What Fabian and Sebastian have built is a company that is based on recognising the human condition of patients and their care. WarOnCancer has an authentic presence and new way of caring about patients and data, and as a consequence, have managed to break medical and cultural stigmas.
Via co-creation, WarOnCancer gives users both moral and economic returns on investing their patient data onto the platform. WarOnCancer has managed to draw together a common need, beyond direct patient treatment, while tapping into the potential in patient reported outcome.
“Patient Reported Data, which is translated into Real World Evidence, is an incentive for pharmaceutical companies to work with us… they can see long term implications/side effects on the patient use of medication. We make sure to communicate that our members are an ecosystem by including both Pharma and patients on their own data journey.” – Sebastian Hermelin
From the patient side, WarOnCancer “… asks users if they want to part of a, lets say, survey or have their information matched to a clinical trial. It’s essential that we don’t only just stay completely transparent but innovative in leveraging the benefits of transparency” says Fabian Bolin.
Patients are kept informed on how their information is being used, speeding the time towards matches of clinical trials, meanwhile enabling pharmaceutical companies an understanding of the effectiveness of their treatment and drugs. The decision of including the patient in managing their data, is also what separates WarOnCancer from other organisations that work with patient reported data.
According to a Princeton ethicist, Peter Singer’s definition, this is practice is effective altruism. Knowing where your data is going and how it will be used becomes effective by combining cost-effective data management and philanthropic actions to make smart and ethical choices.
“We know that 95% of patients are more willing to provide personal data if they know where and how the data is going to be used.” – Sebastian Hermelin
With the global pressure in data-use transparency and GDPR, the healthcare industry is not alone in facing the pressure of privacy challenges in why and how personal data is used. This model is particularly sustainable as it leverages data using Machine Learning and Artificial Intelligence whilst adhering to data protection regulations. By using a transparent data gathering, dispersing and management system the company can easily obtain the data subject’s consent and remove it as simply. Having knowledge of where and how the subject’s data is dispersed, used and managed could impact the rate of removal, however.
WarOnCancer argues that healthcare needs both a system built on gaining knowledge on, and solutions aimed at, patients’ emotional experiences as well as the motivation to provide and use data. For WarOnCancer, it’s a simple concept – motivation comes from an intrinsic/emotional drive, and it is this concept that hospitals, Medtech companies and Pharma need to understand and leverage from.