Nowadays, healthcare in general, is always one step behind; treatment of patients starts after the diagnosis. In many occasions, this is too late. Technological developments and the use of Big Data can change this, improving the prevention, diagnosis, and treatment of diseases in the nearby future. Correct use of these developments could enable a high tech, high touch, predictive & proactive form of healthcare that is tailored to the individual. However, collecting and combining data is essential to this development. And that is where it gets complicated…
A great amount of data is already available, however, it is scattered throughout hundreds of different systems and databases. Many initiatives nowadays aim to combine this data into one big database, enabling thorough analysis by researchers.
A limitation of this data is the fact that people only enter this database when they become patients; healthy people don’t appear in this database. An example of an initiative to collect data from healthy individuals is the Precision Medicine Initiative (PMI) initiated by President Obama, aiming to fuel the development of precision medicine. One part of the PMI is the creation of a biobank containing samples and data from over 1 million Americans, following the UK Biobank which already holds over 500.000 samples available for research.
The possible cures
But how to get people to donate their samples and data? As Blake Byers, partner at Google Ventures, mentioned during the Big Data in Biomedicine Conference earlier this year at Stanford University, “we should focus on the user experience, which is the only way to stimulate users to donate their data”. The next part of this article focuses on several solutions to this problem.
Better understand your DNA
So how to create a user experience that creates value for the user, but also collects useful data for future research? An example of a company focusing on the collection of data by adding value is 23andMe with researcher Richard Scheller. 23andMe offers a kit that (costing €169) enables the user to sample saliva and have it analysed by researchers. The company then analyzes your DNA and genetic code and generates more than 60 personalised genetic reports. These reports range from carrier status, for example, whether or not you carry a gene increasing your chances of getting Alzheimer’s disease or Sickle Cell Anemia, to ancestry reports telling you how your DNA is structured in terms of background in different cultures and populations. 23andMe creates value for the user, but also analyses this data further and complements this data with questionnaires sent out to its users. This way a huge database of personal data combined with additional information is formed. Collected data is then used for further research to increase the understanding of the human genome and possible medicines and treatment methods.
Improve your tooth brushing habits
Another more specific solution is the “Plaque Monster” app developed by Jason Wang, a Stanford researcher. This app is aimed at encouraging children to brush their teeth. The monster has to be fought by brushing your teeth and thereby taking care of your ToothPet. Instead of creating a one-off game, this game is constantly evolving. By delivering different “hooks & nudges” to stimulate children to brush for different groups, the effectiveness is constantly monitored by analysing their brushing behaviour. This data is collected and used for research, as well as improving the game, creating a better brushing habit. This creates value for both the user as well as the researcher.
Find the cure for Parkinson’s
Big Data can also be used to find cures for more serious problems like Parkinson’s disease. Shahar Shpigelman of Intel is currently developing a platform together with the Michael J Fox Foundation called Foxinsight. At this time, there are over six million people worldwide that have Parkinson’s disease. At the same time, there is no test to diagnose the disease, trials are very expensive and little data is available. Their solution is actually quite simple. They have developed an app, Foxinsight, that is used in combination with a smartwatch. Equipping people with Parkinson’s with a smartwatch and the app, patients are provided with insights into their behaviour and the effects of their sleep and medication rhythm on tremors. This data is also collected from the entire population of patients and used for further research investigating the disease. This creates the Win-Win situation that is needed for this data collection.
However, these cures do not come without complications…
Looking at the initiatives mentioned above, it may seem rather simple to use modern techniques to create a huge database of patient en population data available for researchers to improve future health(care). However, one very important critical note, which was stressed by Yale University professor Harlan Krumholz, is the fact that business models of universities, pharmaceutical companies and hospitals depend on having exclusive data as one of their main assets. As long as this is the case, development towards a general database containing all data is very far away. An initiative aimed at solving this problem is the app SyncforScience (S4S). The app enables people (both healthy people and patients) to connect all different databases containing personal data and puts the person in control of this data. The app then lets you determine which researcher can use your data for what type of research. This creates great amounts of data available for research. It also improves the relevance and quality of research since researchers have to convince people to provide their data.