Patient data: Who owns it? Who can improve it? What's it worth?

As the patient moves into the consumer role in healthcare, more questions emerge around their role in data exchange.
By Laura Lovett
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We are living in a time when there is increasingly more data being collected, opening up more opportunities for researchers. As the industry begins to see patients become consumers, the conversation around this data has begun to include questions of ownership and compensation. 

“What we really want to do is empower patients to take back full control of their data,” Nicolas Schmidt, chief product officer at Embleema, said at HIMSS19’s Consumerization of Healthcare Summit. “Then we use this data. We find a cure, accelerate or bring to market more treatment, and [patients] should be compensated for it.”

One of the main questions that has come to light is who owns patient data — the patient, provider or payer? But some are saying this is the wrong way to look at data; that it isn’t so much about ownership, but who is sitting in the driver’s seat when it comes to how that data is used. 

“I think when we talk about ownership that is really the wrong question. It really is about control, privacy and consent,” Christopher Sealey, cofounder of Coverus, said at the event.  “Because when we talk about ownership there are a lot of examples of data being used in negative ways that are exploitative. But there are also a lot of examples of data being used to empower patients to keep people healthy. So I want to be clear that we want to put patients in the driver's seat, and we want to disrupt negative healthcare practices.”

Sealey said that even the patient can have multiple reasons for giving researchers access to their data. 

“I have a question over ownership because individual decisions I make are not pure and my motivation can be compromised by my financial situation, my lack of information etc., and also my individual decisions of what I do with my data could have very big effects on other people and my community and workplace,” Sealey said. “So I think when we say the patient should own their data, I think that comes from the ethos of wanting the patient in control, but I think we have to realize that individual ownership may not actually help the patients as much as we think.” 

Another avenue being looked at is giving patients a way to get something in return for their data. For example, Nebula Genomics’ business model includes sequencing consumers' genomes and then letting them trade that data for cryptocurrency. 

“The way the system is set up today, the people we want to be winning, aren’t winning. The patients aren’t winning, researchers aren’t winning because they are getting data that isn’t clean,” Kamal Obbad, cofounder and CEO of Nebula Genomics, said at the panel. “You talk to biopharma, they are telling us that the data sets they are collecting from third-party data brokers are subsets of data and it doesn’t make any sense. We do want to find a way to engage patients and incentivize them to participate in this process — to share what is clean data, to share what is longitudinally so we get holistic views of health data.”

One of the main themes during the panel discussion was this idea that incorporating the patient in the data exchange could be beneficial for all parties. Currently research data is often fragmented and only captures one piece of a patient’s overall health. If patients have incentives to share more about their life it could be a more complete picture. 

“You have this system where the patients are the one actor excluded from the value chain of data,” Sealey said. “Yet you can also argue they are the one actor that can single handedly make that data the most valuable. So it’s not just directing your health record. It’s telling people how you felt after you took that pill, it’s revealing things about your lifestyle and purchase history.”

When it comes to patients sharing their data in exchange for some form of compensation, there are still a lot of questions including value and use. But as patients continue to move into the consumer role there is no doubt the conversation has only just begun. 

“I don’t think it's just a question of giving people their records and letting them broker it, it is understanding that they hold the key to the most powerful tool,” Sealey said. 

Consumerization of Healthcare

In April, we'll look at the consumerization of healthcare from a variety of angles, including how to treat patients as customers.