Algorithms, AI, electronic health records, sensors, apps, robotics and data registries. A lot of new buzzwords have become commonplace over the last couple of years. One of the most important and often discussed technical terms are ‘data’ and ‘data sharing’. I once heard the phrase, ‘Data is the new oil’ in terms of fueling advances. Sound scary?
Maybe, but there is a clear message behind it: it is all about data. Data are important sources of information. We use data in every aspect of our lives. We couldn’t move forward without data; data are our grounds to change things. To learn and progress, to find something new. We would not be here today if generations of ancestors hadn’t used data to learn and understand more about the world, and of course share it with others. The difference today is that computer and digital solutions help us to collect and analyze data in much greater volume and much faster. We can also share data much farther – no longer restricted to just one’s family or their village, knowledge is shared globally.
Especially in healthcare, data are important. When data are available about living with a disease, its diagnosis, management and specific treatments, we understand that disease better and can find new ways to take better care of patients. It is important for me too. I have lived with Multiple Sclerosis (MS) for more than 15 years now. When I was diagnosed with MS, data took on new meaning for me. The knowledge garnered through data and provided on a small number of websites helped me to learn more about my disease and how to find a way through. Over the years these datasets grew and helped me out of some difficult situations. New treatments became available, new tests came up and new solutions were developed. Through data, scientists found out more about MS and it helped me to understand my life with the disease better. Living with MS is an ongoing process, there is no cure, but there are new findings based on registries and data collection, which are analyzed by researchers to help me to make informed decisions and find appropriate support.
The call to action: be a data donor!
Over the course of the last decade, there was one call to action that secured a firm place in my mind: ‘Be a data donor.’ It makes perfect sense to me. I learned from my own experience that data can make a big difference to patients and all other parties in healthcare such as scientists, doctors, the pharmaceutical and biotechnology industry, health insurers and last but not least, caregivers.
Data help us to learn more about diseases and enable us to take new steps forward to improve care for patients. Data support people living with disease to become informed and empowered; to enable them to make better decisions and advocate for themselves. Data can have a huge influence on the quality of life of a patient through the security of knowledge. The basis for all this knowledge are reliable datasets, the collection of which helps to generate further knowledge and glean new insights to help patients and create new structures in healthcare.
Data used for machine learning can help to find ‘biomarkers’ (biological signs of disease) and identify diseases faster. They support doctors to carry out recurrent procedures, which can otherwise be boring and tiring, to help find answers quicker and better inform the patient. Saving time through efficient data use means making more time available for doctors to talk with their patients to discuss therapy options or next steps.
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Why are data registries so important – particularly during a pandemic?
Finding out more about the populations that live with a particular disease helps uncover their needs faster. Since the beginning of the pandemic, many new registries were opened to collect data from patients living with chronic diseases to understand how their bodies react when they are infected by the coronavirus. Exploring the connection between a disease which is already established and the new coronavirus infection helps scientists and doctors find effective ways to treat those patients. An example of this is the data sharing initiative of the MS Data Alliance and the MS International Federation.
Different countries provide different perspectives and trust levels
I was always open to share my data, because I know the importance of every single piece of information. In countries like Finland or Estonia this is customary. The citizens of these countries give their data to national registries to enable Research and Development (R&D) organizations to find better ways to take care of patients. I asked an expert from Estonia why data sharing seems to be so easy for the people in his country: ‘It is a question of trust and digital and health literacy,’ he said.
I couldn’t agree more, but I see the other point of view. The concerns of citizens and also doctors regarding data. Citizens are often overwhelmed because of the information and the use of jargon or buzzwords as described at the start of this blog, as well as wider ethical questions. This has been especially true for many during the pandemic. Digital health has accelerated rapidly, decisions have been made by governments for public safety, but information for citizens has not always been delivered well. Patients and citizens lagged behind, taking their time to make sure that they understood everything, which they often did not. A lot of people got lost in the digital world.
Digital and health literacy as critical to improving data sharing
We need data and comprehensive information to be shared across Europe to benefit patients; to support doctors and scientists to help people get better and faster; to provide evidence to payers and governments to restructure healthcare systems and support R&D.
We also need the electronic health records to enable patients to share their data and let doctors know the details of the disease they have in order to receive personalized medicine and better care. COVID-19 was an inflection point in the discussion about data sharing and the use of data. What we need now is more digital and health literacy in the lay public. People have to understand the procedures around data sharing and how data can be and are anonymized. They have to be informed. Information is the key and it must be provided by governments and specialists, in ways that are transparent, easy to access and understandable. Health data are needed and will help to realize new and valuable healthcare concepts.
I share my data already. It is important for other patients, so altruism is another motivation to talk about the importance of data, because data can save lives and help patients to have better lives. I am happy to help and also to have a good and satisfying life; well informed through data, living with a chronic disease like MS.
Social Media & Digital Health Expert, Journalist, Speaker and Analyst
Data Saves Lives, Editorial Board Member