Future of Patient Centric Data

Monday 5th June 2017

We are delighted to announce another major Future Agenda project for 2017 – exploring the potential for more patient centric data to transform healthcare.

Future of Patient Centric Data

During the second half of 2017 a series of events are taking place around the world to bring together different views on how evolutions in data creation, availability and sharing are providing greater autonomy, control and access to patient information while simultaneously ensuring safety and security. Following the well-regarded Future Agenda format, these will be discussions between experts in health, data and adjacent areas exploring how the emerging shifts may evolve, play out and with what implications.

It is clear that healthcare is at a point of transformation. The escalating challenges it faces are putting increasing stress on the system at the same time as better understanding of the possibilities of effective data sharing and analysis is emerging. Specific opportunities are seen to lie in rethinking data ownership and creating an open data ecosystem. In particular, many organsiations are interested in the benefits from moving data into the hands of the patient and truly allowing individuals to be more in control of their information - and so potentially at the centre of their health.

While different parties are proposing alternative means by which personal data stores can be best created and deployed, there is widespread agreement that this route can have benefits for both the patient and the overall healthcare system. Personal data stores could provide greater autonomy, more efficient access to information and better control of its distribution. However, some fundamental concerns around safety and security still need to be addressed and different governments around the world are currently taking alternative regulatory positions on this.

In addition, for some, the challenge of creating the platforms that can integrate and interoperate with new and legacy information systems is substantial. As a growing number of organisations individually propose solutions in their home regions, many are seeking an independent, collaborative, global point of view on the possible and probable ways forward that can then be shared and used to better inform future decisions.

To begin the dialogue, a post on the Future of Healthcare Provision – Opportunities for Patient Engagement was published in January. We have now shared an initial view of some of the key issues that different organisations believe will have impact how we access, share and make better use of patient data. This is the starting point for a wider global discussion that will highlight the most important shifts taking place, their likely effect and implications – as well as the associated security and safety concerns.

A number of workshops are now being scheduled for September, October and November in The UK, US, Singapore, South Africa and, important for the EU regulatory view, in Brussels. As funds and logistics allow, more may well be added in other locations such as Australia, Japan, Norway and Germany. Each of these events will be hosted by forward thinking organizations keen to enable debate and input different perspectives into a unique collaborative view – one that we hope will advance the dialogue both regionally and globally.

We will be announcing firm dates, hosts and confirmed locations over the next month or so. If you would like to be involved in this important project, as participants, hosts or in other partnerships, do get in touch and let us know

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