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Patient Centric Data: A check-up

The latest on Future Agenda’s global health project

Healthy discussions on Patient Centric Data

In four short months, Future Agenda has covered a lot of ground in its exploration of how patient data will shape the future of our health services. A lot of ground in terms of the myriad expert discussions, but also in the physical distance travelled to ensure a truly global perspective on this hugely important subject.

After kicking off in Dubai at the end of September, events have been held in Johannesburg, Oslo, Brussels, Singapore, Sydney, Mumbai, and London. There will be four more events in January before work begins on the final in-depth report, which already promises to be a highly insightful read.

Internet of Me caught up with Future Agenda’s Director Dr Tim Jones to get the global perspective so far.

As well as gathering new ideas from each location, workshop attendees discuss a range of existing insights and rank them in order of importance. The results reveal both consistent trends and regional differences in perspectives and priorities.

One of the key themes to emerge has been the challenge of integrating diverse sets of data in ways that can make it useful across different platforms, apps and systems.

“Combining together data sets and interoperability have been big issues that people have wanted to delve into in just about every location,” says Tim.

“There are questions around who is doing the connecting of data sources. In somewhere like Singapore it is mandated by the government — there is sharing between government departments and not just health but education and labour. It’s happening anyway because they are talking about health being part of your national identity.

“In other parts of the world there are quite a lot of challenges around knitting together legacy systems.”

Who owns and controls patient data is another consistent topic, along with the role of state-backed services and private sector marketplaces.

Future Agenda Director Dr Tim Jones

Tim says: “When it comes to control there was a really useful conversation in Brussels where many people said it’s not about ownership or access, it’s about custodianship. Rather than expecting patients to own their data, it’s more about them being custodians.

“There has been significant interest in discussing new models. That topic splits quite neatly into a conversation about technology firms coming into the space, and also what’s happening with things like data marketplaces, with countries like India setting the standard. Data marketplaces is one of those issues where some people are quite passionate in saying we should not be making money out of selling healthcare information and in other places people are saying that it’s happening, it’s already here and it’s going to grow. Healthcare data is really valuable so the challenge is how to make these things work.

“Again, it was Brussels that said we need to decide what is the public commons and what is the commercial space. At the moment, it feels a bit like the Wild West.

“The Brussels conversation was really good about saying there is data for the public good which needs to be made available so everyone can progress but there are also commercial opportunities and those, like any marketplace, need to be quite clearly mapped out otherwise we’re going to get ourselves confused.”

The exclamation from one workshop that “health data is a goldmine” highlights the possible tension between its use for the public good and straightforward commercial opportunity. But, as Tim says, the two needn’t be mutually exclusive.

“There’s going to very high value data but maybe that could subsidise the rest of the system and almost create healthcare for free for everybody if the balances and checks are put into the right places.”

The progressiveness of both Singapore and India have also been common points of discussion. Singapore is something of a trailblazer with its Personal Data Act that has similarities to with the forthcoming EU General Data Protection Regulation (GDPR). India Stack is a set of APIs designed to allow innovation across a wide range of services, with its Aadhaar identity verification technology that is the world’s largest biometric ID system, covering over a billion Indian citizens.

Internet of Me went along to the recent London event to experience a workshop at first hand. The attendees were drawn from a broad cross-section of sectors including advertising, academia, pharma, personal data solution providers, patient advocacy and front-line clinical care.

It was a fascinating and quite intense day of set exercises and free-range thinking within a framework that provided direction without being restrictive.

Discussions of what we thought would be the most significant changes in digital health over the next decade threw up the emergence of data marketplaces and the impact of blockchain technologies to increase transparency as key issues. Making data innovation relevant and useful to the individual, along with the challenges of owning and managing increasing volumes of information, also featured as important topics.

The conversation took in many more wide areas such as innovative business models, data philanthropy, Internet of Things and artificial intelligence.

Of the 24 existing insights we discussed, ‘Getting closer to the patient’ was ranked as likely to have the most impact over the next decade, followed by ‘Embedded AI’, ‘Combining data sets’, and ‘Linkability of open data’.

Interestingly, in Sydney — culturally and socially similar to London — ‘Getting close to the patient’ ranked only mid-table, with ‘Genetic profiling’ taking top spot followed by ‘Linkability of open data’ and ‘Predictive analysis’.

Brussels, on the other hand, was more concerned with privacy, consent and balancing encryption against the actual use of data by medics.

Tim and his team will wrestle with balancing such differences and similarities as they set about writing the final report once the last workshops have taken place.

January represents the final straight for the Future of Patient Data programme. It will also see the first input from the US where the legal and regulatory landscape differs greatly from Europe or countries such as India and Singapore.

“It will be interesting to see what happens when we get to Boston and San Francisco,” says Tim. “In quite a few places there has been a lot of mistrust of the agenda of some of the US-based organisations. In Australia, they pointed out that the fundamental difference between privacy and protection in the US and elsewhere was that US legislation protects US citizens but doesn’t protect other countries’ data. So the land grab for other countries’ data is being viewed with suspicion outside the US.”

The final confirmed events in the project will take place in Toronto on 16 January, Boston on 17 January, San Francisco on 19 January, and Frankfurt on 25 January.

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