If New Year’s resolutions were an accurate indicator of who we actually are, all of us would be thin, fit, organized, educated, altruistic, agreeable non-smokers. Usually it’s the easiest promises that we make ourselves, but they are almost always not kept. Research shows that we’re more likely to create a new habit when we make it really meaningful. Because it’s not worth the heartache to make resolutions that you won’t keep, instead, this year, change your mindset and adopt these new year resolution ideas for a meaningful 2020:
Share your data.
There is one area where every stakeholder in the healthcare space can participate, without spending fortunes, ensuring that millions of people will benefit from the transformative potential of precision medicine. Data sharing. When trapped in silos, healthcare data, does not yield maximum value. Compartmentalizing information limits all of us from making large strides in research, which ultimately puts a limit on the benefits that can be made available to the public. The sharing of health information can enable data re-use and can increase the value of data to the data holder, and secondary data users, with additional positive spill-over benefits for healthcare systems and society at large. However, currently, the majority of all genomics data on the planet is collected and stored in silos – in hospitals, biobanks, pharmaceutical companies, academic labs, direct to consumer (DTC) genetic testing companies, and population studies. Only by breaking down these data-silos, we will make breakthrough scientific discoveries and develop treatments for many of the complex diseases that plague our healthcare systems. So, this year, commit yourself to share your data with the scientific community to platforms that leverage new technologies such as cryptography, blockchain, and AI. We have the technologies to make this happen; it’s mostly an innovation averse mindset that holds us back, particularly in the medical professions.
Getting access to a global pool of de-identified genetic and medical records data is a “win-win” situation for all. The first global wave of data sharing needs to be concentrated on genetic- and associated metadata, as all healthcare data should be put into an individual’s genomic context. In the following wave, let us add electronic medical records, payer claims, imaging, and self-reported patient data, socio-economic and longitudinal omics data, as well as medical device data to the mix.
Finally, let’s not forget to take advantage of wearables and new sensor technologies that provide unprecedented windows into patient health. The sharing of your data will help transform how clinical trials are conducted, significantly reducing the time to get innovative therapies and preventive measures from drawing boards to the patient.
Control your data
Some people may argue that by sharing their valuable datasets, they have to give up IP or the chance to monetize the data, but this is not true anymore. New technologies, such as blockchain platforms and newest cryptographic algorithms, allow data owners (it doesn’t matter if you are a doctor, a patient, researcher or data custodian of larger datasets) to share their proprietary data while still keeping full control and ownership of all datasets. The way to do this is by using ‘smart contracts’, blockchain-based computer protocols, intended to digitally facilitate, verify, or enforce the negotiation or performance of a contract. In an ideal case, patients and healthy individuals should be taken on board of this journey. In most countries, people are quite willing to share their personal health data.
While sharing private individual’s information provides opportunities for healthcare organizations to launch new business models that create value in ways brand new to precision medicine, stakeholders need to take care with whom to share data. There are tendencies in healthcare systems to transfer the control or ownership of data to external, often private institutions. While this can work in some cases, it is potentially dangerous. The explosion of health data is unprecedented and already IT giants like Apple, Tencent, Amazon, Alibaba, Facebook, and Google are competing for control over health information and how that data will be collected and served to data users.
Recently, Google confirmed a partnership with Ascension, a major hospital chain and health insurer, that resulted in the transfer of 50 million Americans’ most intimate (and not de-identified !) medical records to the Silicon Valley company, without the knowledge or consent of those patients. Google’s handling of patient data has been controversial before. In 2018, the search giant’s work with the UK’s National Health Service was criticized for not adhering to data governance standards and potentially breaking the law. The company was also sued for allegedly mishandling patient data in a study conducted by the University of Chicago. A solution to this situation is that the patient or their data custodians need to be in control of the data flow, not governments, hospitals, and organizations that collect it and certainly no IT giants.
For patient advocates, this is a no-brainer, it’s what the patient wants that should matter most. Data privacy protection requires the decentralization of data generation and storage and the adoption of privacy-preserving technologies that are already available.
Curate your data
Before you share your data, make sure the data is of high quality. Data repositories are increasingly faced with the challenge of ensuring accurate data and efficiently managing and curating that data. This can be solved by a greater focus on the education of database curators and the standardized inclusion of healthcare data and references in databases by “community curation”, in which research communities curate their databases themselves. A possible way to encourage this curation process can be a model that compensates data producers for good quality data and validating data authenticity. If the source of the data is unknown, or the data producer does not cooperate, medical data cannot be validated. Data collected from different sources also must be made machine-readable and interoperable. One critical step in this process is the adoption of FHIR (Fast Healthcare Interoperability Resources) Specification, which is a standard for exchanging healthcare information electronically.
Encourage others to share their data
Breaking down traditional thinking patterns in the medical field and applying emerging technologies to share, manage, and analyze complex datasets, will help to revolutionize healthcare and will, in time, deliver amazing new breakthroughs for everyone. To make this work, individuals and communities of data users and data holders can facilitate and encourage data sharing and help maximize the value of data re-use. This requires promoting the use of models for the sustainable donation and commercialization of data and aligning current incentives structures. When people take responsibility and take ownership of their data, there will be seismic shifts in the strategic improvements of our healthcare systems. Make it your personal mission and use the new year to work together, turning distributed and siloed healthcare data into life-changing discoveries.
Dr. Axel Schumacher
Founder & President Shivom Ventures Limited
About the Author
Dr. Schumacher is a serial entrepreneur, author, & futurologist and Co-Founder and President of precision medicine company Shivom. Axel is the author of the “Blockchain & Healthcare Strategy Guide”, a ‘must-read’ for decision-makers in the digital healthcare vertical. Axel is particularly well known for his work in epigenetics. He invented the first microarray technologies for epigenetic biomarker discovery, developed the ‘epigenetic theory of aging’ with his research leading to the worldwide first proof of whole-genome epigenetic abnormalities in Alzheimer’s disease. Axel’s mission is to translate scientific discoveries into practical applications to help understand and prevent complex disorders, and to transform the way we age. Axel is also a forerunner in exploring strategic opportunities in the fields of bioinformatics, multi-omics, digital health, and genomics data analytics. He holds a Ph.D. in Human Genetics from the University of Cologne/Germany.