This blog is part of the GMTCC 2018 blog series. You can follow the conversation under #GMTCC and find more details and at gmtcc.com. Check out related blogs: Swifter, Higher, Stronger: Promoting MedTech Ethics on the Global Stage,How to create and maintain an ethical culture,Global Responsibility, Global Ethics and Compliance, Global Principles for MedTech Innovation, Progress and new challenges after 10 years of collaboration, Distributors play key role in compliance and New industry code must safeguard independent medical education
There is considerable hype around the potential of big data to change healthcare. Much of this is justified: large datasets and increased computing power are combining to make healthcare more personalised, more precise and more predictable.
This revolution draws on the skills and knowhow of engineers, biologists, data scientists, lawyers and others, and is changing the life sciences industry in the process.
However, all actors working in this space – from industry titans to newcomers with roots in the tech sector – must prioritise compliance. In particular, it is essential that we take data privacy seriously. From the R&D stage through to direct consumer interactions, we must think carefully about how we collect, store and use data.
That is why security and privacy by design are essential to companies like Verily. The company’s history as the life sciences division of Google means data security is woven into its DNA.
Indeed, Verily is a member of AdvaMed, and its compliance program follows highest standards of the medtech industry.
Getting data privacy right
We are at a crucial moment in the history of health data – we have a unique opportunity to transform the diagnosis and treatment of ill-health.
Getting this right is critical to the future we envision to empower patients with the information they need to stay well, to understand risks to their health, to know the prognosis of disease, and to choose treatment options with the best chance of success for them.
One of Verily’s initiatives, the Project Baseline Study, is collecting health data from thousands of participants over several years. This dataset will become a reference – or baseline – for good health as well as map charting the transition from health to disease. The goal is to understand the clinical, behavioural, environmental and other factors that shape our future health status.
The results may also be a catalyst for an outcomes-focused value-based healthcare, as well as for clinical research, helping companies to identify sub-populations in which to study new interventions.
This wealth of data must be safeguarded within the tensions that a data-driven future creates. For example, how do we balance privacy with transparency? The patient’s desire for information must also be squared with our responsibility to make that information meaningful. Study participants have voiced their desire to know more about the data they are contributing to research. Handing information to participants on their five-year cancer risk for example, without context or support from qualified health professionals, may result in misunderstanding or unnecessary distress, which could be irresponsible and unethical.
These are the kinds of tensions we must work through together. Companies, regulators and patient advocates must come together to design systems fit for the future of healthcare.
Data protection regulations such as the new EU data protection rules (GDPR) and industry-wide ethical codes are valuable touchstones on which to build data-driven healthcare. At the heart of this will be the values that matter most to patients and participants: transparency, portability, consent and ownership of data.
I am confident that we can navigate this journey into uncharted waters together, knowing that our destination will make the effort worthwhile.
