NEW YORK (GenomeWeb) – San Diego-based digital health firm Seqster recently launched a platform that it says will give consumers more control over who sees their health information and how it's used.
The platform launched earlier this year aggregates people's health data from wearables, consumer genetic testing, and electronic health records, and gives users the ability to explore it on their own or share it with others. They can contribute specific health data to research. Caregivers can use the platform to manage their loved ones' medical data in a single portal. Seqster also envisions the platform as a place where people can preserve their family health history and gain insights into hereditary risks for diseases like cancer and Alzheimer's.
"You control what data you share," said Seqster CEO Ardy Arianpour.
The company claims its platform can pull electronic health records for individuals seen by more than 1,000 healthcare providers using Epic, Cerner, Allscripts, and Athenahealth systems at more than 2,000 clinics and hospitals. Cleveland Clinic, Partners HealthCare, MD Anderson Cancer Center, Sutter Health, and the University of California, San Francisco are some of the healthcare systems the platform can glean data from.
The platform also pulls in data from wearable devices and raw genetic data from consumer genomics firms, such as 23andMe and Ancestry.com. Arianpour said the platform doesn't interpret users SNPs in the context of their health, but aims to capture trends in the aggregate data and present it in an engaging way so users will be interested in exploring this information and be motivated to share it with researchers and family members.
For example, a graphic provided by the company (see detailed image here) shows how the platform would present individual and family members' SNP data associated with late-onset Alzheimer's risk from raw 23andMe data, cognitive scores, and sleep tracking information. Because in this example some family members have Alzheimer's-associated SNPs and high cholesterol, the platform advises the user to consider taking tests to see if there is a familial risk for the disease. The platform also provides links to Alzheimer's research on the role of sleep and cholesterol management.
Arianpour provided an example in which an early user's aggregated EHR data indicated that although her LDL was still within normal range, it had been increasing in recent years. During the same period, her wearable devices indicated that her exercise levels decreased and her genetics data suggested that controlling her cholesterol level with endurance exercise may be beneficial.
"While we cannot under any circumstances be seen as providing clinical advice, many of our alpha and beta users discovered important health trends in their lab data with the aid of the visualizations we provided that were never disclosed by their primary care physician because they were not out of normal range," Arianpour said.
It's free for consumers to use Seqster's platform. Seqster relies on arrangements with partner organizations to make money. "There is an upfront cost to deploy the technology," Arianpour said, explaining that Seqster's partners will pay for providing research participants or organizational members access to the platform.
Seqster has had 1,000 alpha users give feedback on the platform, and Arianpour said the vast majority of these early users were "highly interested" in being more involved with their health data, in having more control over it, and in donating that data to advance research.
It remains to be seen if the platform will be widely embraced by consumers, since it's only had a limited launch. The company recently inked partnerships to make the platform available to patients and caregivers served by the George G. Glenner Alzheimer's Family Centers and to the participants of a Boston University study on traumatic brain injury.
Choosing to share
BU's Ryan Center will test out the willingness of research participants to use Seqster in a study enrolling 25 athletes diagnosed with concussion and 25 contact sport athletes who are getting treated for non-concussive reasons. While these athletes recover for four to six weeks, researchers will track them using digital health modalities in the clinic and remote monitoring devices.
"This is an opportunity where study participants can use Seqster, gather their own health information data, and share it so we can use it as part of our data," said Rhoda Au, the study's leader and a professor at BU's anatomy and neurobiology division.
Researchers commonly take health histories from study participants, but the accuracy of that data is dependent on the individual's recall of that information. "In this case, we're asking them if they're willing to use Seqster to help aggregate whatever data is available," she said. "This is about being able to put together a longitudinal medical history database in relatively short order, almost instantly, that's also likely more detailed and accurate than using the regular approach."
Rhoda's group is interested in using Seqster to aggregate data in other studies where participants may receive testing through a consumer genomics platform. "Obviously, sharing of genetic information is much more sensitive," she said. "The advantage of Seqster is it puts the decision making in the hands of the individual and they get to decide what to share or not. From an informed consent standpoint, that's sort of new in research."
The traumatic brain injury study, which is in the process of getting IRB approval, will inform participants during the consent process on the use of the Seqster platform and how their data will be used and protected. Seqster provided GenomeWeb with a screenshot of the research agreement a user would see and agree to in joining the BU study. The agreement lists the specific data sets that the user wishes to share with researchers and includes a "health information protection advisory" from the study sponsor that outlines who will have access to the shared information and how it will be protected.
"Seqster is new, and so we're educating our institutional review board on this," Rhoda said. "The thing our IRB understands is that the data that comes to Seqster doesn't come to us. The data goes to [the participant] and they can choose which of that data to share with us."
In addition to enabling data sharing for research, the platform allows users to designate access to care givers and family members through a trademarked service called HealthTrust, a feature Arianpour believes makes his company unique.
A year ago, in the midst of developing the platform, Arianpour's 92-year-old grandmother, who had Alzheimer's, passed away. It bothered Arianpour that when she died, she wouldn't pass on her health data to her family members. "We have a will for things like property and jewelry, but … there's nothing more important than your health," Arianpour said. "And we only care about it when we get sick or when a loved one gets sick."
Seqster — the name is a nod toward those searching for more information about their own health and loved ones — worked with a team of lawyers to develop a legal framework or contract through which users could license certain rights to their health information to a designated third party. The intended recipient can agree or disagree with the terms of the agreement, but Seqster warns that by agreeing to the contract, the recipient "may be receiving sensitive health information that will have implications for [their] own health."
A screenshot of a HealthTrust legal contract viewed by GenomeWeb shows that it enables the user to grant designated recipients the authority to access their health information protected under the Health Insurance Portability and Accountability Act and state laws. HIPAA is a federal law that sets out privacy, access, and security rules around healthcare data that providers and insurers, or "covered entities," have to follow. The law also gives individuals the right to access their own medical record.
However, "none of those [covered] entities are in the business of aggregating and managing your health information for you," said Behnam Dayanim, global co-chair of privacy and cybersecurity practice at Paul Hastings, one of the law firms that worked with Seqster on HealthTrust. "As a result, Seqster needed to look to legal principles of licensing and ownership."
The HealthTrust feature was a key draw for Scott Tarde, CEO of the George G. Glenner Alzheimer's Family Centers, in partnering with Seqster. The non-profit provides daycare and other services for Alzheimer's patients and their families, and Tarde expects that Seqster may be of interest to caregivers who have power of attorney to act on behalf of their loved ones, but who are struggling to keep track of all the necessary health information for them.
The website for the San Diego-based organization currently highlights Seqster as a free service for families through which they can collect and monitor their family's health data and "establish a valuable health asset … for generations."
"If you asked me what my grandparents' health information is … I could tell you what I've heard through my parents, but I couldn't tell you anything specific," Tarde reflected. He further noted that in an intractable disease like Alzheimer's, the ability of families to collect this medical history and genetics data is particularly valuable from a research standpoint.
This idea of passing on relevant disease risk information within families is an emerging area of research in the genetics space. In a 2015 study led by University of Washington's Gail Jarvik, for example, 72 out of 78 patients receiving exome sequencing for familial colorectal cancer said they wanted their results disclosed to a spouse or a biological relative if they died before the results were released.
According to Malia Fullerton, an associate professor in UW's bioethics and humanities department and a co-author of the above paper, a growing body of research indicates that individuals getting tested as part of genetics studies into serious illnesses have an interest in relaying any clinically significant findings to their biological relatives. However, outside of very specific research contexts where the findings stand to impact blood relations, Fullerton wondered how interested people would be in passing on — or being the designated recipient of — health information with less obvious utility.
"I know there is a subset of very active patients, who are part of this quantified-self movement, where people want to have very detailed information," Fullerton said. This aggregated information may also be of interest to researchers using machine learning approaches to analyze big data, but she was skeptical that the average consumer would want to sift through troves of family health data in an effort to find something relevant to themselves.
"Would there be something buried in these datasets that individuals wouldn't already know from familial health risk factors?" she posited. "It's hard to imagine what that would be."
Seqster will have to study and publish data demonstrating the utility of the platform as more people use it. Meanwhile, the firm has discussed partnerships with organizations representing patients with chronic health conditions. According to Arianpour, diagnostic labs are interested in partnering with Seqster to ease patient access to test results, and pharma companies could also use the platform to enroll participants in studies.
In the future, Seqster will implement ways in which users can sell their data. "We want families to generate monetary value from their health data," he said.