When scientific studies are representative of people’s lives, then the discoveries that result will be more broadly applicable to and successful for all. This means we, as study participants and partners, must be able to engage directly with researchers while preserving our privacy. We’re excited to share a new LunaDNA innovation that achieves just that.
The traditional study protocol lacks direct participant engagement and thus limits high-quality, long term data collection, restricts invitations to new studies and clinical trials, and jeopardizes the preservation of personal data privacy. Often, researchers resort to gathering retrospective, fragmented data which misses the critical context of lived experiences of those managing a health condition. Through Luna, we are enabling people to share what their needs and priorities are for improving health and enabling researchers to react to what they are learning, and nimbly adjust their data collection to dig deeper in areas that are showing significant importance.
With study participants more directly involved, researchers can follow up with them to ask for additional information to augment their study, invite them to join new studies and clinical trials, remind them to complete study requests, and share insights from their analyses.
The ability to dynamically reconnect with study participants while they maintain their anonymity is a challenging problem for most platforms because they were not built in a participant-centered manner. LunaDNA was built with privacy-by-design and with individual data control compliant with modern consumer privacy laws like General Data Protection Regulation (GDPR) and California Consumer Privacy Act (CCPA). LunaDNA enables an intricate connection of participants and their shared data that protects the participants’ privacy, secures their health data, but also enables the possibility of privacy-protected communication between researchers and participants.
What can participants expect?
People control which researchers can contact them based on the communities and studies they join. They can also choose to allow any researchers to contact them, which provides them with opportunities to join studies and clinical trials. When a researcher contacts them, individuals receive an email from LunaDNA informing them they have a message in their account. Once they login, they can access the researcher’s message in their notification center.
To drive better health breakthroughs faster, people must be at the center of research, working alongside researchers to find the answers to our greatest health questions. Recontact Agent™ is one of many LunaDNA solutions that are reshaping the way research is done. Sign up for LunaDNA today to join the community-breaking barriers in research. Already a member? Log in to your secure account to ensure you’re leveraging Recontact Agent™ to directly contribute to health discovery.
One day in the near future, we’ll wake up in the morning and the first thing we hear will be a personal digital assistant providing us information on our relative mental and physical well being without having to ask.
Based on continuously streaming wearable or implantable device data, interactive gamified surveys on our phone, our health histories, microbiome and genome profiles, artificial intelligence algorithms will continuously monitor our health, searching for early symptoms of disease, chronic condition flare-ups, or assisting us with diet or fitness goals. Today’s data innovations are not only ground-breaking, they’re life-changing.
Artificial Intelligence’s (AI) power will be unleashed when there is comprehensive, detailed, and longitudinal data available at population scale. AI combined with continuous data contributions over time, by individuals, will power discoveries for society, while also enabling personalized medicine for the individual. In the near future, complex health and medical problems will be solved at an exponentially increasing rate, ultimately improving quality of life for all.
But this vision of our future is not limited by technological innovation. Rather, it’s limited by people’s trust or lack thereof in any organization working to collect comprehensive individual data. How many people will willingly and continuously contribute detailed personal health & medical data to organizations that they don’t have a deep, trusting relationship with? And consumer trust can only be earned by enabling individuals to control their data, know when and how their data is being used, and share in any windfall gains earned from the data.
That’s why the public benefit corporation, LunaPBC, founded the LunaDNA Platform, a data-sharing and research discovery platform. Anyone and everyone can remotely, digitally, and easily participate in science, with privacy protection, full data control (consistent with CCPA & GDPR), as well as transparent operations. LunaDNA is accelerating medical breakthroughs by advancing people from subjects of research to partners in discovery. Through this community data-driven discovery, the most important questions are answered, the right problems are solved, and people’s lived experiences are included in cutting-edge studies and trials.
Innovation has always been proudly hailed as a core value in business, and rightfully so. Every business leader will admit this powerful tool supports developing valuable technologies, designing disruptive products, and vastly improving the way products or services are delivered to optimize business models. But what seeds innovation? How might business leaders develop this skill to make true, impactful change? It starts with creativity.
When applied appropriately, creativity is the secret sauce for improving organizational efficiency, decreasing costs, reducing risks, improving morale, and of course, seeding innovation. It is a crucial organization asset all too often left untapped. Fortunately, we all have the capacity to be creative in solving problems and carrying out work responsibilities.
Developing a creative organization often starts with 1) clearly communicating the organizational challenges staff should consider, steering the creativity process squarely in the direction of value creation, and 2) teaching the fundamentals of the creativity process.
Organizations must encourage and nurture creative thinking and the sharing of ideas between employees. Innovation can arise when the right creative ideas are then implemented to solve important challenges and move the company forward to meet its goals. It is critical to continuously engage team members on the organization’s mission, goals, and main tactical challenges, while empowering them to think about, share, and discuss ideas.
Identifying the key problems to be solved, root causes of the problems and the strengths and weaknesses of existing options often enables us to surface valuable, new, creative solutions.”
Initial ideas may sometimes be silly, impractical, or seem to result in new problems, however, the journey to the right solution follows a path of thoughtful analysis of many wrong solutions. This deep understanding of the problem, the landscape around the problem, and the intricate details of the flaws in proposed solutions lead us to new creative solutions.
Implementing Creativity to Impact Genomic Sequencing
Reflecting back on my 15-year career at Illumina, architecting the HiSeq is a great example of creativity utilizing technology tools to design a disruptive new product. Illumina, the biotech giant, was in a heated competition fighting to stay a half step ahead in the marketplace by introducing incremental product improvements to its Genome Analyzer DNA sequencing machine. Simultaneously, some of us focused our thinking on a bet-the-company strategy to reduce sequencing costs by at least a factor of ten. To accomplish this, we first had to understand and model the transformation that occurs in order to convert biological information — the A, C, T, and G’s in our genome – to digital information that could be stored on a computer. Based on this understanding and knowledge of available technology building blocks, the HiSeq instrument was architected using technologies that followed Moore’s Law improvement curves. We chose technologies that would both provide an order of magnitude improvement over competitive offerings at launch, and provide a decade-long product roadmap that would improve on performance by two orders of magnitude. The resulting HiSeq product line not only broke the $1,000 genome barrier, but it was also capable of bringing the cost per genome down to $100 in the future.
Reinventing Industry Business Models
Similarly, LunaDNA’s solution to catalyzing health research is an example of creatively reinventing the industry business model to enable unfettered access to health data and accelerate the pace of discovery. This mission-driven journey began years before co-founding the organization when many of its executives from Illumina began investigating impediments to understanding how the human genome impacts health.
We uncovered multiple factors slowing the pace of discoveries, including structural impediments. Institutions refused to share data, viewing this information as proprietary assets on their balance sheet. Attempts to establish federated data systems linking data from national genome centers, academic medical institutions, and for-profit organizations failed. Even when federated models included organizational permissioning and price setting for data access, there was little interest in data sharing. The personal data of individuals was being scooped up and locked away as organizational bounty.
We also identified social impediments to data sharing. In 2013, I sponsored a scientific meeting at the Banbury Center at Cold Spring Harbor titled Accelerating Genomic Research With Privacy Protections to determine the extent to which we, as a society, can protect genomic information and utilize it for the greater good. Many experts in the field were invited. Attendees reviewed technical options to protect privacy and security, and explored the challenges faced by academic researchers, hospital systems, and direct-to-consumer genetics companies in engaging study participants and soliciting consent for data sharing.
It was at this Banbury meeting where we learned that an increasing participant engagement could not be solved solely by technology alone. Lack of engagement could be attributed to the individual’s lack of trust in the data stewardship. The group authored a White Paper published in PLOS Biology, entitled Redefining Genomic Privacy: Trust and Empowerment. The paper concluded that trust and empowerment were the keys to gaining consent and engagement from study participants, and this gaining of trust could be accomplished through transparency, control, and reciprocity around the use of their data. Needless to say, the lack of creativity the future of health discovery was facing was apparent to many experts in the field.
As the meeting progressed, we shifted our focus from discovering links between our genome and our health to more generally improving health and quality of life. We became aware of additional impediments caused by “missing data” in studies; data that only exists in the heads of individuals. Examples of this missing data include patient-reported outcomes, patient adherence to physician recommendations, and behavioral information such as diet and exercise. This missing data could only be accessed by forming a trusted relationship with individuals, establishing long-term engagement, and educating people on the value to themselves and the communities of their participation in health research.
Creatively Changing Societal and Regulatory Issues of Data Ownership
Another important factor in health discovery much acknowledge is the changing legal and regulatory issues related to personal data privacy. The increasing awareness of how personal data is being used and abused is causing a societal backlash. Legislation is quickly putting a stop to many of these abuses, such as the General Data Protection Regulations (GDPR) in Europe and the California Consumer Privacy Act (CCPA). Corporate brands are getting tarnished when privacy violations are publicized. These factors have to be taken into account when creatively designing a data and discovery ecosystem.
The LunaDNA business model and the HiSeq architecture did not arise simply by putting all this information into a bucket and magically coming up with a solution. The solutions arose because this information was understood by the founders. In the case of LunaDNA, the information formed the basis of many creative discussions around what a successful and disruptive solution to enabling unfettered access to health data might look like. In the end, one concept rose to the top: return ownership of the data back to the individual. The problem could not be solved with an institutional data ownership model. It was time to do what is right for people and respect a person’s right to data privacy, control, transparency, and attribution. We directly invite every person to join the journey, to collectively catalyze health discoveries.
So in 2017, we formed LunaPBC, a Public Benefit Corporation, and then founded LunaDNA.
Different than the institutional data silo model, LunaDNA forms a data-sharing relationship directly with individuals and communities, is interoperable across communities, delivers value to participants, and operates under the U.S. Securities & Exchange Commission oversight (covered in Nature Biotech) and in compliance with modern international consumer privacy laws.
Both in the example of the HiSeq $1000 genome sequencer and creation of community-owned LunaDNA, creativity arose as a result of a deep and comprehensive understanding of the respective ecosystems and free-flowing analysis and conversations focused on new approaches to success in each ecosystem.”
These approaches aligned with the mission, purpose, and strategic aims of the people and organizations involved.
I would like to thank all of my colleagues at Illumina and at LunaPBC for joining me on these journeys, and Fast Company for honoring me with Most Creative People in Business Award for 2020. It’s been a fun ride.
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