Would you consider donating your data to healthcare?

Data-capturing platforms must adhere to strict regulations. But what if data could be “donated” by patients to advance medical research?

It is clear that many of us don’t feel like we are in charge of our data. We don’t know how to access the data we have created, and we are becoming increasingly concerned about who has access to it and how it will be used. And it is no wonder. Many apps, wearables, social media platforms and websites will say they have our consent, but it is typically not dynamic consent and rarely is it truly informed.

As we enter a new era of data rights, technology platforms that capture data and store it must be compliant with the changing regulations and legislation coming into force around the world, ensuring consumers are protected and their data is secure and private. This poses an interesting question around who owns the data we generate and how it can be used and by whom.

A lesser-known fact when it comes to the conversation around data is the huge value it holds to potentially transform medical research within the healthcare sector, and it goes without saying that informed consent is absolutely critical in sharing any health-related data.

Bioinformatics is an interdisciplinary field the brings together biologists, mathematicians, computer scientists and statisticians to develop methods and software tools to understand biological data that has been captured in tissue samples, clinical information created and stored in hospitals and data from experiments in research laboratories around the world, for example. It’s a relatively new field of research that became prominent around 2007, hailed as a ‘revolution’ in fast-tracking drug and clinical discovery. Bioinformatics is the art and science of asking the right questions with the right data and it has played a significant role in delivering powerful information and insight into diseases, how they develop and how we might treat them.

But there is a new generation of social bioinformatics that is emerging, powered by the data individuals are creating by capturing our patterns of movement, sleep, mood, images of ourselves and the evidence of our bodies and minds during a normal day via personal digital technologies.

A new fast-paced field of interest to researchers is in real-world data (RWD) and real-world evidence (RWE) in the healthcare industry worldwide. These are relatively new phrases that describe the valuable data that comes directly from patients that may be capturing information about their everyday movements, thoughts, results or actions while going about their everyday lives. This real-world data may come from a variety of sources, like Fitbits, apps, all sorts of wearable devices and social media — otherwise known as user-generated content.

Now, can you fathom the potential here if patients who are in complete control of their data can then gift their data to medical research in a compliant and ethical way?

Imagine we could more accurately predict the outbreak of a virus, gain a deeper understanding of how people are coping with pain or gain insight into the real lived experience of people with Parkinson’s disease via social media data and content mapping.

Or let’s consider another real-world use case. For patients taking new generation cancer drugs, such as immunotherapies, we know that the lived experience of taking the drug, in fact, any drug, is often different to the reported experience to doctors and nurses people often under-report adverse and positive side effects to doctors. This is because clinical settings are just that — clinical, and don’t much resemble the way patients and their carers behave and operate in the real world.

This is where attitude, behaviour, opinion, RWD and RWE around various types of cancer is extremely valuable for researchers. By using data donated by patients, researchers’ understanding of how people view treatments, cope with pain, how they approach screening events and their quality of life while living with a chronic disease, becomes more reliable, more real and far more useful.

Just think about all the times you have personally Googled, searched YouTube or clicked on a Facebook link related to a health topic or posted a selfie letting family and friends know that you have recovered from an illness and that you are back on your feet. Now imagine collecting all these tiny data packets shared to social media or the internet, to build a picture of all the people searching the same thing within a geographic region. Suddenly, these tiny data packets have created a map of symptoms, location, gender, concerns, comments on drugs or medical devices people have used; and is a wonderfully valuable data library for medical researchers working on new treatments and diagnostics.

This kind of data could genuinely revolutionise the way we deliver healthcare. As the amount of data grows exponentially with the increasing use of digital health apps, smart wearables and social media, researchers who recognise the growing value of all of this health-related data are more frustrated than ever before as they search for new ways to ethically access valuable data with our consent and find technologies that help them to understand and analyse the enormous lakes of data that we are continuously creating every minute of every day.

The opportunity to speed up medical research and unlock some of the mystery and misconceptions around diseases, disorders and injuries by harnessing all of this social bioinformatics data is at our fingertips, but we need to ensure our approach is secure, respects privacy, is compliant with regulation and legislation and provides value to the data owner as well as the researcher.

Our data crumbs have the potential to deliver enormous value when they are grouped together. Our data also reveals a lot about us and when used unethically it could become an intolerable risk and burden. We have two key opportunities to ensure that the data revolution delivers genuine value and improves our lives without doing harm — to legislate and regulate thoughtfully and securely, and for each of us to take back ownership of our data and decide who, when and under what conditions it can be accessed and applied.

Written by Michelle Gallaher, CEO of Opyl Ltd.

This article originally appeared in The Australian in March 2019.