Helping patients access life-saving information faster
FIND PERSONALISED TREATMENTS FASTER
SocialGenomics mission is to help millions of patients and their loved ones.
We envision a future where having money, intelligence, and a network don’t determine your chances of survival. We believe every person has the same rights. Living on today’s planet, we have the technology to democratize access to people, information and experts. Our aim is to democratize access to relevant information by building a global knowledge source of experiences from similar patients that went before them to accelerate finding a personalised treatment. So that every diagnosed patient is able to tap into a network sharing relevant and life-saving information from all patients that went ahead of them. No matter where you live nor your social background.
Leveraging intelligent technology to connect the dots
We believe that every patient and their loved one deserve access to information and treatments that work for them. Access to relevant personalised information will enable you to find what you need, when and where it’s needed.
To make this possible, SocialGenomics is building the world’s most human and connected AI platform that links patients based on their individual case. Relevant experiences and insights from other similar patients and information from world leading physicians and scientists will be matched with each patient.
SocialGenomics is not new. We are founded in 2018 and are a trusted partner. From the start we already had 1000 patients registered with tumors and rare conditions. We guided patients who approached us with support requests and established collaboration with expert oncologists guiding patients further. Through these connections patients gained access to studies with personalised treatments, that they would otherwise maybe not know about.
We are now building a digital platform where we are going to transform all manual work that is done helping patients in person, into an automated platform where there is still room for personal contact. We will connect patients’ to relevant information, we will offer personal guidance in the medical jungle with any question you have and in a next phase we will connect also researchers and pharmaceutical companies to accelerate data-science research to discover what works best for which patients and how could we use these insights to give more patients access to personalised treatments. We expect that the first phase will be ready by the end of 2022. In the first phase we will mainly focus on esophagus cancer.
In the beginning we are searching for patients’ like Harry who also have metastatic esophageal cancer with HER2 protein. We want to connect them to share experiences and see what treatments they had. This website is now live and will be updated regular.We encourage all patients and loved ones to share their stories via our experience wall. Through the experience wall we improve awareness of what barriers patients are facing and what questions and needs they have.
In parallel, we are also soon launching a new highly secure technical portal where every patient has the possibility to store and secure his/her medical data in a secured personal health safe. As we believe that wherever you’re in your journey searching for answers, the most important thing is to assemble all your data and insights from the start.
As Harry’s journey is informative for every patient who is struggling, we support everyone to register to our network, also if we don’t have a focus on your specific condition yet.
SocialGenomics is unique. Differently than many other parties in healthcare, we place the patient and loved ones central. We believe that by uniting similar patients, beyond geographical area’s, not only helps patients to help each other, but also to build a new industry standard. A standard around the needs of patients. We are a trusted network partner driven to improve access to personalsised treatments for patients around the world. Like the moonshot, we are aiming for the Moon and with the support we now have, we are convinced that in a few years we have helped not only Harry but thousands of patients and families. Our first focus area is Esophagus cancer, finding answers for Harry, together with Harry as patient advocate, but we will scale to other disease conditions and sub-groups in the next phase.
We have a vision, mission and a plan to execute. It’s difficult to work from patients towards the system, but because something isn’t easy doesn’t mean it doesn’t need to be done. With the extensive expertise in personalised healthcare from Susanne Baars, Harry Verbunt as a patient advocate searching for a personalised treatment and all the support we have now from our networks and major tech companies, we are at the beginning of something great.
FINDING A PERSONALISED TREATMENT FOR HARRY
What are we going to do?
Harry is a living example of the impact of personal guidance with access to information, experts and network to gain faster access to the right care. In his case, an experimental personalised medicine. Still, more is needed. His tumor is not cured yet and the journey continues also in this phase of treatment. The mission is to find a personalised treatment to extend Harry’s life or to find a cure for Esophagus cancer with his proteins. Cancer is intelligent, we need to be smarter. The network with insights from similar patients is going to help Harry to get access to experiences that he otherwise couldn’t find, to use data-science analytics to learn about his case, identify what works best for his personal situation, and to learn from things other patients discover from somewhere else in the world. We advise patients to always focus ten steps ahead in the process.
What’s important for Harry’s:
Learn from everything that is known about Harry’s tumor from other patients. We need to find as many patients with similar tumor in the world.
- Peers helping peers. Connect with them to share their experience > what treatments do they receive, how do they respond to it, what did they learn from their search and how do they feel moving through the different phases.
- Mental support from patients who experience exactly the same. When you go through a journey through this, it’s incredible powerful to connect with patients who exactly understand what you’re doing through.
- Accelerate research through data from patients in different geographical locations.
Launch platform for Harry and patients like Harry, connect physicians, patients, 1-2 countries
Grow number of patients sharing experiences, 4-6 countries
Scale towards worldwide coverage, Harry and other tumors access to a global knowledge source with life-saving information
A MOONSHOT mission…With support from people around us, we hope to scale and grow faster in more countries to help more patients.