Empowering patients to lead the way on using data for better health outcomes

May 29, 2018   |   Elena Bonfiglioli - Senior Director, Health and Life Sciences, EMEA, and Cornelia Kutterer - Senior Director EU Government Affairs, Privacy & Digital Policies

Innovation happens when society adopts new technologies and processes in a widespread way. It’s what is happening right now through the deployment of health data across Europe. And it’s a process Microsoft is proud to be contributing to with today’s launch of the new Patient Voice platform.

It has never been easier to gather, store, share and assess data. But obstacles remain to making best use of this data for our common good and better health outcomes.

The sensitivity of health data – and stringent rules under GDPR – are not the problem that some may claim. A thoughtful approach to this issue was included in the recently-released European Commission Communication on digital health, which proposed a mechanism for the voluntary coordination of health authorities and other stakeholders to share data. The goal? To enable the digital transformation of healthcare whilst respecting privacy and data protection.

Such initiatives also contribute to addressing the real issue: the question of trust. Each of us needs to trust that, if our most sensitive and valuable data is being used to advance the common good, it is being done in a way that does not compromise our identity, privacy or well-being. Building trust is a gradual process, which must be driven by credible and authentic voices.

Patient organizations have an important role to play here. Patients trust each other, especially in the context of long-term illness or recovery periods. In such circumstances, people facing similar health challenges come together: something we’ve seen first-hand by lending our support to WarOnCancer, a patient-driven social platform hosted in the Microsoft Cloud which connects cancer patients, their loved ones, and survivors. The patient-led element is vital. It’s up to these communities to dictate for themselves how technology might be able to help them.

It is this spirit that Microsoft has joined forces with industry partners Takeda and SoftJam to launch Patient Voice, a patient-owned and led platform for sharing health data and enabling it to be used to report on outcomes (in line with the International Consortium for Health Outcomes Measurement standards).

Hosted on Microsoft Azure, Patient Voice is designed to help patients report and measure their outcomes (PROMs) easily, effectively, and with confidence that their sensitive health data is secure. The platform will also give patients actionable insights related to this data, meaning they have more productive and effective conversations with their healthcare providers and systems.

Other members of the Patient Voice partnership include chronic bowel disease (IBD) patient groups from Canada, Italy, Spain, and Sweden, and their overarching umbrella organisation, the European Federation of Crohn’s & Ulcerative Colitis Associations.

These patients groups will be in charge of the information hosted on the platform. This helps further foster trust regarding data usage. And it makes aggregated data available to trusted research partners for secondary usage, which can in turn drive better healthcare solutions for the future.

As with all prospective futures, this solution is still unevenly distributed. More needs to be done to ensure the benefits of new technologies for health outcomes are widespread. Yet new technologies also inevitably raise complex questions and broad, societal concerns that we need to address, notably regarding the ethical use of health data. Ethics are the bridge between our shared values and the trustworthy use of data for social good.

Fostering an open conversation on this topic is vital for underpinning progress: something we aim to do through our close collaboration with Professor Luciano Floridi, Director of Oxford University’s Digital Ethics Lab. One outcome of this has been an ethical code on posthumous data donation. Future research will focus on how to holistically capture ethical and sensitive uses of data. And last November, we launched a year-long pan-European dialogue on Health Data Ethics to build on this vision with more stakeholders – a regrouping in the European Parliament is planned for November 2018.

Microsoft aims to democratize the power of AI and the cloud to benefit all of society. But the journey is a shared one. Only by working together with relevant individuals and organizations can we ensure technology serves our communities in the way that suits them best. Enabling patients and doctors to achieve more with technology relies on a human-centric vision for healthcare, where all individuals are involved with data discovery and usage, empowering them for a healthier future. Follow our progress and stay tuned for updates here.