The Patient Summit Europe 2019

Oct 15, 2019 - Oct 16, 2019,

The Patient Summit is the only event you need if you’re looking for hands-on industry examples, the critical success and challenge factors, and the answers to issues ranging from compliance to culture. No more theory, time for action.

Whose Data is it Anyway?

When cancer patient Pete started to look into who held records about his illness and treatment, mapping the journey of his data proved to be no easy feat.



When cancer patient Pete started to look into who held records about his illness and treatment, mapping the journey of his data proved to be no easy feat. Tracking where his information was held, had been used, and might yet be used in the future took tens of hours of searching and filing requests.  
 
As a member of use MY data, a UK-based patient group working to build confidence in the use of healthcare data, he is helping to demonstrate how much work the industry has to do when it comes to transparency around patient data.  
 
This lack of accessibility, coupled with the wider suspicion around data usage thanks to well publicised data breaches and the cavalier ways some tech giants have acted around privacy and consent, make it understandable for patients to worry about how their information is being used or profited from. 
 
But it doesn’t have to be this way, as healthcare professionals (HCPs), pharma and patients alike all have much to gain from there being greater clarity around data usage. HCPs want to work with patents to improve care while patients are generally happy to consent to this if their trust is earned, says Chris Carrigan, expert data advisor for use MY data.
 
When consent is clear to all parties and can be monitored in real time, or adapted for future uses, patients can be satisfied their data is being used appropriately in ways that respect their privacy. Meanwhile pharma companies and providers have greater freedom to work with data, gaining more value, driving innovation and improving outcomes. 
 
The rise of ethics in data
Pharma firms are desperate for clarity on the ownership of data and the use of ethically governed and clearly consented data, says Richie Etwaru, founder and CEO of Hu-manity.co, makers of the My31 app focused on ensuring data protection. Using blockchain technology to distribute digital information securely, My31 aims to enable users to manage consents and claim data as their own. 
 
Developing a sound, ethical relationship with data usage is imperative to pharma’s development, he says, citing pharma’s four largest strategic spends – precision medicine, digital health, patient engagement and prevention. 
 
In all of these categories innovation will come from the greater use of data and artificial intelligence (AI), which will continue to raise ethical issues around the use of data, says Etwaru. This makes it overwhelmingly in pharma’s interest to have clearly laid out ethics and clarity around consent, enabling data to be exchanged and traded. 
 
“The buyers of data on the healthcare side would love to have data that is properly permissioned,” says Etwaru. “As a pharma organisation, what I need is explicit consent. I can’t live in a world of under-consented data.”
 
True consent provides the trust necessary for a functioning exchange of data and the associated benefits that will flow from that, says Carrigan. “If we don’t get trust and transparency right, we won’t be able to do innovative things such as link across data sets, follow people across their lives, look at issues pre-diagnosis and the impact of primary care treatment. 
 
“Patients are also likely to be less willing to submit their own data to reveal the impact of lifestyle behaviour and so on. The world of real world evidence is reliant on large data sets and if the level of trust decreases, that becomes more difficult and makes long-term studies and follow ups much more difficult. Transparency makes things easier. It seems to me it offers a spiral of improvements.”
 
Unpicking the data supply chain
When it comes to earning patients’ trust, part of the problem stems from the fact that, until now, no one has been required to think about trust as anything other than a vague abstract principle. Different parts of pharma and healthcare all have different data interests, work in silos and seldom question where data comes from or goes to, says Anish Shindore, Head of Digital Acceleration at Sanofi. 
 
“No one is looking at the data supply chain or asking the big questions. If you look at everyone that touches data – generating, managing or using those data for insights – these are completely different sets of people. They may have a faint idea of how this data flow happens, but they are so focused their bits and pieces they don’t care.”
 
An industry-wide creation of standards around the appropriate and ethical use of data is the starting point to enable organisations to show patients how their data is being used. The IEEE Standards Association is laying an ethical foundation through their Fair Trade Data Initiative, upon which more transparent marketplaces for patient data could develop.  
 
Hu-Manity.co claims its technology platform will create the conditions for such a marketplace capable of transacting trusted data. Its permissioned data marketplace will enable patients to quickly see who holds their data and to agree the extent of its use in an instant and easily controlled format built into the smartphone healthcare apps they already use.
 
App developers would integrate Hu-Manity.co’s ‘Trust Development Kit’, freeing them from having to build their own data transparency criteria and offering the benefit of joining a platform through which they could tap potential new sources of revenue. The company likens the TDK as having a human data ethicist and a data privacy expert in the product and design teams of apps and devices. 
 
Pharma, meanwhile, could access a deep pool of explicitly permissioned data, as well as having the opportunity to retain a relationship with data owners over time – enabling pharma to engage with them via digital questionnaires to help them improve the quality of existing data or create whole new data sets in very little time. 
 
Commodifying data
Platforms like this would help create a broad and deep marketplace in which data is viewed as a commodity, traded like a bushel of wheat or a KWh of electricity. “We see data as being consumed like a utility,” says Etwaru. “If companies are interested in testing a hypothesis they plug it into the healthcare database and pay for the amount of Fair Trade Data units required to test it.”
 
Does such an approach have a whiff of technological utopianism? Carrigan thinks technology is not a pre-requisite for establishing data trust between patients and the healthcare industry. A simpler approach also capable of making a difference would be in the form of patient data panels, acting as two-way forums in which patients are consulted and then their concerns are acted on. 
 
Engaging patient groups around the use of their data at the outset could help avoid mistakes like the data breach between London’s Royal Free Hospital and Google AI subsidiary DeepMind, says Carrigan. In 2017 the hospital was found to have breached UK data privacy law when it handed over personal data of 1.6m patients in a bid to test an innovative app for kidney injury diagnosis and detection. 
 
“Governance with the right oversight and patient panels would mean the organisation would have to listen patients when they say something is wrong,” he says. “That is a 'positive negative’ outcome – the ability to hear a negative response from a patient oversight panel is a good position to be in before any mistakes are made.”
 
Competitive advantage through consent
Such high-level governance that meaningfully engages patients may not work, however, in a future when healthcare services are consumed in more personalised, digital ways. The increasing use of AI to drive new insights from data will shift the ethical landscape, demanding more flexible, technologically-led solutions which allow for permissions to change over time.  
 
Consent-as-a-service, with adjustable, time-limited micro-consents, offers the way forward, says Etwaru. “We think of consent today as being this permanent on/off switch. That is not the way consumers are thinking about consent. What percentage of real world data has consent associated with it that was captured more than a decade ago? Most organisations will say, ‘We don’t know,’ and those that know will be ashamed to tell you.”
 
Getting to grips with the ethics of data will become a source of competitive advantage and may even become an existential issue for pharma, Etwaru adds. “The people who are buying under-consented data today are not bad people, it is just the current state of the supply chain, like fair trade coffee was 10 years ago.”
 
“But the absence of an ethical compass within an organisation is the new absence of innovation – you are setting yourself up for your Kodak moment, or your Blockbuster Video moment. 
It is an inevitability. The data we have shared so far pales in comparison to the quantity we will share in future.
 
“We are moving into an economic period where trust and transparency will be the primary competitive differentiators. This is our opportunity to subscribe to a supply chain of data that respects its source.”
 
 
 

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The Patient Summit Europe 2019

Oct 15, 2019 - Oct 16, 2019,

The Patient Summit is the only event you need if you’re looking for hands-on industry examples, the critical success and challenge factors, and the answers to issues ranging from compliance to culture. No more theory, time for action.

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