Challenge of sharing healthcare data
How data trusts can help innovation stay at cutting edge despite privacy concerns
Pinsent Masons intellectual property and data law specialist Ann Henry: “Data trusts offer a new way to extract significantly more value from existing data and to provide an opportunity to access much broader datasets to aid product and service innovation.”
Big tech can offer Ireland new healthcare solutions, according to Pinsent Masons intellectual property and data law specialists Ann Henry and Mark Marfe. “Finding ways to improve public healthcare, while controlling the costs of that service delivery is a hot topic,” says Henry. “Ireland is the EMEA HQ for many of the leading tech and pharma companies which are collaborating to do just that for patients in the areas of preventative medicine, diagnosis and treatment. The potential benefits to patients are real. And Ireland could be one of the first jurisdictions to realise the benefits if we take advantage of the opportunity on our doorstep.”
Marfe refers to Apple chief executive Tim Cook’s recent visit to Ireland where he said he believed the cost of healthcare can fundamentally be taken down, probably in a dramatic way.
“Technology companies are already investing heavily in healthcare research,” says Marfe. “Last November, the Apple Women’s Health Study was launched. Participants feed data from their iPhones or Apple Watches to an app which collates the information to investigate the influence of demographic and lifestyle factors on the heart, hearing and women’s health.”
The availability of such data is critical to the success of many of the research initiatives in this area, but there are issues to be overcome, he points out. “Under GDPR, patient health data is considered ‘sensitive data’ and can only be processed lawfully in limited circumstances. Sharing data in a lawful, fair, safe and equitable way is one of today’s most difficult global challenges – with 80 per cent of the world’s data still locked up behind closed doors.”
Unlocking that data would unleash significant innovation, not just in healthcare but across sectors, he argues. “Of course, data privacy concerns are legitimate and so the question is how can you accommodate all these interests and yet strive for cutting-edge innovation?”
Data trusts might be the answer according to Henry. A data trust is a legal structure that provides independent stewardship. It is a flexible and sophisticated form of data sharing for a defined purpose. Done well, it is a means of generating trust – in the everyday sense of the word – to help unlock data in a safe environment.
“Data trusts offer a new way to extract significantly more value from existing data and to provide an opportunity to access much broader datasets to aid product and service innovation,” she says. “There is great demand internationally from both the public and private sectors to make use of data trusts although, there are currently different ideas how to implement them. A data trust’s purpose can be narrow or wide, depending on the aims of the stakeholders. Participants come together around a particular cause, a specific market or a sector such as healthcare. It can be societal or environmental and for the public good or for the generation of profit.”
Aided by machine learning and AI, the ability to analyse diverse high-quality datasets in such trusts can produce new and enhanced insights that can benefit participants at a faster pace than a company could on its own, according to Marfe.
“The spirit behind data trusts is openly collaborative and explorative,” he says. “Each stakeholder has a voice in establishing the purpose and structure of the trust. The trust is itself subject to a robust governance regime so as to reassure participants that data will only be used appropriately and for agreed purposes and that their data is protected.”
And there is an opportunity there for this country. “Ireland has two key global sectors on its doorstep in pharma and big tech, in addition to a robust regulatory regime defending the data protection rights of Europeans,” says Henry. There is a real opportunity for Ireland Inc to bring these interests together and to provide leadership for the enormous change that tech can bring to healthcare in Europe. We should run with the baton.”