Data sharing infrastructure is maturing

A new standard for sharing health data has been developed called the Fast Healthcare Interoperability Resources (FHIR) API. This API means anyone can exchange structured health data regardless of where they work or what system they’re running. This could make sharing data easier not just between health institutions, but also to wider care teams and patients themselves. A range of new services and mobile applications have been developed for patients and clinicians to help manage and improve their care. This gives patients the ability to access, use and edit health data about them in a way that has not been possible up until now.

For us, that means understanding how this information can be put in context, so that that blanket access isn’t the only way to access this data.

Healthcare devices are changing how data is recorded

Internet connected devices have lead to new possibilities for remote monitoring of patients. This rich and detailed source of data could radically change the way healthcare services are delivered, leading to more accurate diagnosis and personalised treatment.

It also introduces a host of challenges when thinking about consent. Due to the ambient nature of this type of data collection, patients will be recorded around the clock – not just when they are on hospital premises. The technology used to gather the data may mean 3rd parties become more involved in diagnosing conditions and delivering treatment to patients. These are problems we’ve addressed before, in our consumer advocacy work, but they take on a whole new weight in the context of healthcare.

New needs are emerging

These changes have implications for how people manage consent, how people understand technology and how services are held to account.

People need new ways to give consent. Patients need to be able to make more granular decisions about what data is collected, when, how and for what purpose. These consent preferences should be dynamic. Patients need to be able to change their consent as their circumstances change. This will mean exploring new design patterns. Researchers from Manchester have started to explore how patients feel about dynamic consent.

People need to be able to make informed decisions. For patients, that means being able to understand how data about them is being used. This will mean exploring new ways of sharing information, and exploring new language. As research from the Wellcome Trust has found, industry terms used by clinicians to describe data use don’t mean much to the general public. To have more open discussions about how patients data are used we need to find new language that patients understand.

The burden of understanding needs to be shared. The healthcare system is becoming increasingly complex. Responsibility shouldn’t just be placed on the patient to understand and evaluate the risks involved with sharing some data. We need new models for patients to give consent collectively to relieve some of the burden from individuals. Citizens Juries are one way of gaining the opinion of a representative group of people on behalf of a group.

Citizen Jury in Manchester (Photo: Connected Health Cities)

Over the coming months we’ll be publishing our thoughts on these emerging needs and others. As a team, we’re starting to talk about issues like how to get consent to use patient generated data, why we think patterns are more useful than portals, and the future of NHS wifi. We’re looking forward to sharing more as we make progress.