Researchers are using big data tools to find new treatments, cures, and diagnostic tests every day. But sometimes their efforts are foiled, or at least made more complicated, by privacy rules and concerns.
Everything from the obvious challenges in regulations such as HIPAA to the more unexpected snafus, like anonymization making a mess of the data sets and the need for informed consent, can quickly derail big data fueled medical research.
Fortunately, most or all of those very complicated challenges are easily circumvented when volunteers willingly offer their healthcare data to researchers in the name of better medicine. The problem is, how do researchers and volunteers find each other?
Sometimes they find one another by rallying around a specific disease or cause. Examples include Project Data Sphere, Sage Bionetworks, and Faster Cures, all of which “pull” patients to them (i.e., actively seek to recruit patients as partners to their individual projects).
But pulling patient data is not always the best way — and certainly not the only way — to get massive amounts of data quickly.
It’s especially ineffective if you want health data from people who are not even patients yet since there is little motivation for them to join a disease-specific collaboration. Yet most researchers want data from a control group and/or from people prior to disease onset.
So how do you find those people and get their data? And what about the thousands or millions of patients with the disease or symptoms you’re looking for — how do you get more of them to collaborate with you on research? Lastly, how do you find data on rare diseases from patients who haven’t been diagnosed yet or who were misdiagnosed? What hay stack might those needles be plucked from?
Enter volunteer and researcher data matchmaking services that “push” healthcare data to researchers. Granted, the concept is new so limitations exist, but the idea is off to a good start.
Open Humans launch aims to match volunteers' private medical data with researchers in need of the data
Open Humans, an online platform funded by $1 million from Knight Foundation and the Robert Wood Johnson Foundation, recently launched so that ordinary people, diseased and disease-free, could push their data to an open database and join specific research projects where it can be easily used by medical researchers.
Health data, as defined in this case, ranges from a person’s entire genome to information from wearable devices. That definition may expand over time. The point is to start somewhere meaningful and build upon it.
“Think of it as open-sourcing your body,” says the project’s director, Jason Bobe who also runs the project’s parent organization, PersonalGenomes.org.
There is tremendous potential for accelerating medical discoveries by helping individuals take their health and personal data out of data silos and making the data more broadly used.
The idea is beautiful and highly functional in its simplicity.
A spokesperson told me:
The idea is to accelerate scientific progress by sharing health data more openly and more widely, including opportunities for individuals to select health data they want to make a public resource. The project is interesting as it stands in contrast to the usual health data privacy narrative, and it is related to Obama’s recently announced Precision Medicine Initiative, which includes a component called ‘sync for science’ to enable individuals to download their clinical data and donate it for research.
At launch, the site invited member volunteers to join three studies: American Gut, which explores microbial diversity of the human body; GoViral, which profiles viruses related to flu-like illness; and Harvard Personal Genome Project, which collects genomic, environmental and human trait data. Other studies will be added as time progresses. If you’re interested in registering your study on the site, follow the online guidelines and instructions.
The Open Humans site also allows members to import their raw genetic data from 23andMe, a personal genome sequencing service. The founders plan to add other health data-related services like RunKeeper shortly.
But just because the data is open does not mean privacy has been forsaken.
Individuals who want to publicly share their data have to pass a test as part of the consent process to demonstrate that they understand the potential risks of sharing personal health data, such as discrimination or embarrassment,
reads the press release.
"We strongly care about the impact of sharing, which is why the project has a research component, including an ethics review board, to study the outcomes of such personal health data disclosure,” said Madeleine Ball, the project’s lead investigator. “Despite the risks, we find many people genuinely want to ‘open source’ themselves to contribute to the greater good.”
To learn more about this initiative, read the “Donate your body to science — without having to die” Knight Foundation blog post or watch this short video, which helped the founders win the Knight News Challenge/Health grant.
It’s all about personal control and the fishbowl effect
What we’re learning about patients in regards to privacy through many big data studies is that they are much more likely to share their healthcare data openly, despite real and perceived risks, if they feel they can trust the source and can control what data is shared and with whom.
In other words, the most common objection to big data projects is the idea that data is gathered, taken and used without the permission or respect of the patient as if the patient is not human, but an animal to be relentlessly studied — the fishbowl effect.
But when patients are given the opportunity to volunteer their health information to help specific medical research projects or medical advancements in general, they happily turn out in droves. Personal control of their data is the deciding factor in nearly every case.
The moral of the story: it is better to ask than to take
Expect more matchmaking services like Open Humans to surface soon to help researchers and patients alike as more entities come to understand that a little respect and a real partnership with participants goes a long way in getting all the data you need and then some.
The nuviun blog is intended to contribute to discussion and stimulate debate on important issues in global digital health. The views are solely those of the author.