Putting the human into the middle

To understand the dynamics of health and illnesses, physicians and researchers need access to more data. How do genomes, proteomes, metabolomes, different medications, behavior, and the environment influence health or a disease? How does a patient’s state evolve over the long term after he or she leaves the hospital? Are there any similar cases in the world we could learn from? With wearables and electronic health records, a big part of the desperately needed data could be generated already – it’s just a matter of sharing and connecting the data in an intelligent way that reveals medical insights.

A first move into this direction is CancerLinQ, a nonprofit subsidiary of the American Society of Clinical Oncology (ASCO). CancerLinQ connects and analyzes real-world cancer data from electronic record sources and combines the expertise of oncologists with Big Data analytics technology in one platform.

Fearless collaboration

This means that the technology to generate, aggregate, and analyze Big Data on health is readily available. It is simply a matter of achieving what Uppsala University’s Magnus Peterson called “fearless collaboration.” There is not only the technical challenge of different data sources and formats, but also the issue of silos within the minds of researchers and institutions. When asked about was the preferred solution to the problem of unwillingness to share data, attendees pointed to the “carrot-and-stick” approach. Using this method, data would be willingly shared among researchers and other medical professionals if it was gained through public monetary support.

Of course there is also the other side, the patient. Most patients who suffer from fatal diseases would likely be willing to share their health data for R&D purposes – for the benefit of themselves and for future generations. But there may be other cases when patients are more protective of their sensitive personal health data. And here the solution again lies within the key message of the forum: consistently put the patient at the center, and go from there.

Putting the data and the power into patients’ hands

While some issues were divisive among the audience, one aspect all members could agree on was that data security and privacy should be a priority when considering collaboration on health data. In that sense, the patient should be the sole owner of all of their personal data and ultimately the one who determines what it be used towards.

It is pretty understandable if a patient does not want to measure and share health data for free. It is the responsibility of care providers, insurance companies, and the life-science industry to provide a real, tangible value for patients as a reward. The patient needs to understand what the data means and which conclusions can be drawn for the patient’s health and for a broader patient group. With that, patients can make educated decisions on what data to share with whom and when, and acceptance to do so will grow.

This would help the ultimate goal to move the conversation towards improved health rather than focusing on curing sickness only – which is the current status quo of modern medicine. One example that proves that prevention is better (and more cost-efficient) than the cure is Gesundes Kinzigtal, which translates as “healthy Kinzig Valley.” With its focus on health prevention, the German healthcare management company receives an anticipated payment by insurers and gets a premium if total heathcare costs are lower than traditional approaches – which, according to its website, seems to work out pretty well!

That being said, thinking from the patient perspective, giving them the power to collect and share health data in real time, and collaborating across institutions on medical research will lead to a big step forward towards value-oriented healthcare. Through this approach, the unexpected may be uncovered and it may contribute to developing new ways to focus on health – ideally before illness beats us.

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