Patient advocates play an important role in patient-doctor relationships and they indirectly help in the speedy recovery of patients all over the world in so many ways. A lot of people do not understand the importance and functions of patient advocacy and that is why we at “The future of healthcare” approached Peter Kapitein to talk about his experience and work as a patient advocate and help to shed more light and understanding on the subject. Thankfully he was able to illuminate and educate us on what exactly patient advocates do, their roles and impact in the medical world, and how they affect us.
Who is Peter Kapitein?
Peter Kaptein is a patient advocate and the founder of the NGO Inspire2Live.
Inspire2Live is an organization that connects patients, researchers, and clinicians, who are ready to fight cancer. They are a group of well trained and qualified patient advocates who work with top clinicians, researchers, industries, governments, and health insurance companies to win the fight against cancer. Their goal is not just to improve the length of life but also the quality of life of patients and their loved ones who suffer from cancer. They do this through hundreds of small, medium, and large activities that connect researchers and industries, encouraging collaborations and cooperation amongst them thereby improving the quality of treatments and also the quality of life of patients.
Inspire2Live is based in Amsterdam, with over 30 patient advocates in the Netherlands, and 12 advocates in other countries around the world. They also have a plan to reach all the continents of the world, building a combination of scholars activists, and high-level patient advocates, just like they have done in the Netherlands and parts of Europe for the past 10 years now since its founding in 2010.
The Role of the Patient Advocate
During the interview, Peter was able to talk about the role and tasks of the patient advocate in health care and precisely why his organization is different from other patient advocate organizations. What makes “Inspire2Live” unique is the fact that it does not only focus on patients but also focuses on the other stakeholders in the medical-industrial complex.
They knock on the doors of researchers and push them to do more by acknowledging how far they have come and encouraging them to do better. For example, they engage researchers to do more research on cases like pancreatic cancer and the pain that accompanies it because pain is a large part of suffering from cancer and also develops treatments for glioblastoma, a brain tumor. Despite the small market, they push researchers to consider patients who suffer from glioblastoma, emphasizing on their needs for the medication that will see them through and improve the quality of their life.
They also knock on the doors of governments and call them out on their regulations and how it does not contribute to the well-being of patients when it should. That is how a patient advocate helps, they reach out to stakeholders in the medical industrial complex and make them know that they can do better and increase the quality of their work; that is what “Inspire2Live does”. They believe that patients are important and by knocking on these doors louder and louder, the quality of the patient’s life will improve.
Inspired2Live consists entirely of volunteers who are passionately driven and highly qualified, using their expertise they are able to slowly achieve their goal. They believe that they can raise the overall survival percentage of cancer patients from 60% to 70% if only experts did what they are able to do right now. They believe that the knowledge and expertise are there and they just need to be goal-oriented and have the will to do what they can to improve the quality of life for patients. So they work hard to bring together all these experts in medicine and pharmaceuticals and they try to improve on their work by connecting them and helping them overcome their failures. This helps them achieve their overall goal which is besides the quality of life of patients and their loved ones ‘getting cancer under control’.
Today’s healthcare world has grown so complex and complicated that patients no longer know how to navigate it, so much has changed and patients are no longer put at the forefront of research, it’s mostly about the business and the profits that can be made. This is why patient advocates like Peter Kapitein are needed, to help patients find their way around, and help researchers and medical practitioners focus more on improving the length and quality of patient’s lives and their loved ones.