“About the information part, it is very difficult to get to the trustful information.” L.A.
Story
In 2018, a regular visit to the doctor turned out to be the beginning of a journey. Unexpectedly, the doctor found a lump in her breast. At first it wasn’t clear what it was, but she soon received the diagnosis of breast cancer.
It was quite difficult for her to find reliable and trustworthy information. The treatment, however, went well. She received three surgeries and did not need to receive chemotherapy. The “breast care nurse” was a very supportive part of the journey, as she was essentially a catalyst between the patient and the doctors (e.g. taking notes in important meetings). This made her journey a lot easier. Another great help was the patient community “Europe donna”, which empowered her to talk to more experienced patients. In general, she believes that women should be more aware of the high probability (1 in 8 women) to get breast cancer. The awareness of this topic needs to be reinforced.
When it comes to data sharing, she is very critical. She insists that patients’ data should belong to the patient. Unless they agree to sell it, patients should always have transparency on who can access and use their data. If it is sensitive data, technologies should be based on blockchain to protect it. Additionally, organizations should show their analysis and usage of the data to the patient. The patient should not need to ask to see their data, instead, this should be offered to them.
“The moment that patients really understand their important and vital role in this healthcare transformation, they become the leading force.”