There’s a call for more access to the leftover data that lying around gathering dust, or that which consumers suddenly realize they own and are willing to give up. And the result is a shift in thinking about the best methods to gather the bytes that could make us better, creating a new MOOD in scientific research: Massive Open Online Data.
Privacy is all the rage. Especially in healthcare with the HIPPA gnomes roaming about. But in some sectors it’s inhibiting access to the critical data that researchers need in order to detect a whole host of disease patterns and the ability to develop the best protocols to treat them.
Increasingly, there’s a call for more universal access to the leftover data that lying around gathering dust, or that which consumers suddenly realize they own and are willing to give up. And the result is a shift in thinking about the best methods to gather the bytes that could make us better, creating a new MOOD in scientific research: Massive Open Online Data.
A persistent need
It’s certainly not the first call for increased access to data for research purposes, since the Personal Genome Project (PGP) has been doing it since 2005 at Harvard, albeit with the caveat that they can’t guarantee privacy. But the TEDTalk I watched recently by John Wilbanks, “Let’s Pool Our Medical Data” opened my eyes to the power that everyday consumers hold in their hands, and new methods for dealing with the privacy and informed consent issues.
In it, Wilbanks challenges us all to consider the discoveries that could result from a giant pool of freely available health and genomic data that has been scrubbed of identification and released into the wild. Since a recent study reports that 90 percent of people are willing to share their anonymized health data, it’s seems to be a trend that’s about to take off. And within that 90%, a good chunk of them said they’d do it even if anonymity couldn’t be protected.
These are the folks who’d be willing to donate their data under an “open consent” arrangement, in which participants are willing to be identified, or understand that their privacy can’t be guaranteed. This framework is apparently effective, since PGP sites have expanded globally—with one in Canada, started in 2012, and Europe’s center at the University College London, established in 2013. A second European site is slated for development in 2014, as well additional sites currently under development in South America and Asia.
Repurposing anonymized data
What Wilbanks is doing through Sage Bionetworks, and its collaborative programs, is to find a way to respect ethical and procedural boundaries while making use of anonymized health and genomic data to create an open, massive, mine-able database that researchers can dig into. A staple of his process is the use of the Portable Legal Consent for Common Genomics Research (PLC-CGR), and experimental bioethics protocols that would allow any test subject to say,
“Yes, once this experiment is over, you can use my data, anonymously, to answer any other questions you can think of.”
Additionally, he says that besides the left-over tidbits of research, consumers should also consider adding their own contributions to an online commons system by reaching back into their “digital exhaust” and grabbing the “digital dust” left by the myriad of electronic footprints they’ve created during their social and medical journeys.
Since consumers can claim dust ownership, it’s up to them to decide if they’d like to donate their health and genetic data to the pool, which could do a lot for the common good—and perhaps even their future selves.
Consumers willing to share
A recently released study by the Robert Woods Johnson Foundation (RWJF), “Personal Data for the Public Good” explored consumers’ feelings about the huge volumes of digital exhaust they own—particularly as the number of wearable devices and smartphone apps increases— and whether or not they’d be willing to share it.
As in the study noted previously, individuals were very willing to share their self-tracking data for research, but in this study, 90 percent said they wanted their data to be anonymized. From this and other results, study leaders concluded that
“to enhance the potential to generate knowledge our of personal health data, creative solutions allowing individual rights to be respected, while providing access to high-quality and relevant PHD (Personal Health Data) for research, must be developed.”
Which seems to be exactly what’s happening at Sage Bionetworks.
All of this thinking correlates with the work being done through the Health Data Consortium (HDC), which is “unleashing the power of open health data,” based on the view that “with large volumes of data already available and the volume growing exponentially, creating a health data ‘ecosystem’ can save money and lives.”
Located in the U.S., this collaboration among government, non-profit, and private sector organizations is working to enhance the availability and innovative use of data to improve health and healthcare—and its network of collaborators is growing quickly. In fact, it recently released its list of Health Data All Stars—a first-of-its-kind directory of more than fifty top domestic health data resources publicly available at the federal, state and local levels. According to Dwayne Spradlin, HDC’s CEO,
“Health Data All Stars is a collection of the organizations and entrepreneurs who are leading the nation in putting health data to use to improve the quality of our health care system and the health and wellness of patients. These All Stars serve as models and resources for others seeking to leverage open health data to drive the next generation of tools and innovations in health.”
Repurposing beyond data
Research needs certainly aren’t isolated to the data itself—which is why this sharing ecology extends to the creative use of “clinical discards” that may be gathering dust, as well. At innovative companies such as iSpecimen, previously-used human clinical specimens are prospectively supplied “on demand” to the research, therapeutic and diagnostic industries.
Such specimens include plasma, serum, whole blood, urine, CSF and tissue that are provided according to the needs of the customers’ study requirements. iSpecimen tracks millions of specimens, and the associated patient data that flows through its clinical partner network—which includes hospitals, commercial laboratories, specialty clinics and academic institutions.
From them, the company is able to obtain remnant samples and de-identified patient data to help advance medical research, with partnership agreements that benefit both parties. Though the specimens are anonymized, demographic and clinical indicators such as specimen type, age, gender, ICD9 codes and test results are provided with the specimens for research optimization. According to Christopher Ianelli, M.D., Ph.D., founder and CEO of iSpecimen,
“In today’s world of personalized medicine, researchers struggle to procure biospecimens from trusted sources. Often, they have to cobble together specimens and data from dozens of sources just to find enough specimens for their studies. The combination of iSpecimen’s pioneering Specimen Management System along with our robust network of clinical laboratory partners provides researchers with a steady supply of high-quality, annotated biospecimens.”
Since a recent National Institutes of Health (NIH) article highlighted the increased interest in translational research and the concomitant need for researchers to be able to collect relevant and useful samples for their research, it would seem that iSpecimen is definitely onto something big.
As the face of healthcare changes, so will the potential for using all of the data that’s generated from the evolution that takes place. And as the potential for data’s use grows, so will its value—which means that we’ll need to apply increasing diligence that strikes a critical balance between protecting those who generate it, and optimizing the ability to use it for the common good. The components of this delicate equation are continually being defined, and will be essential to influencing the MOOD of scientific research that could change the face of healthcare forever.