Author: Shai Blackwell, Managing Director, Anatomy Health
Anatomy Health and Health XL spoke to experts across data, IT, security and life sciences to understand the potential impact of GDPR on innovation on providers in the health and care sector. Ahead of the publication of their findings, Shai Blackwell, Managing Director of Anatomy Health, discusses why GDPR is an opportunity for the healthcare industry to put patient rights front and centre.
With the General Data Protection Regulation (GDPR) coming into effect on 25th May, the stages of readiness across organisations large and small has come into sharp focus. The flurry of re-consent emails hitting inboxes is a useful indicator of how many organisations are getting on top of compliance requirements in this new age of data transparency.
That, coupled with the recent Facebook/Cambridge Analytica scandal, has moved attention not just on to an organisation’s compliance, but also to an individual’s awareness of their data rights.
In healthcare, data protection and information governance controls have always been stringent – yet the impact of GDPR on private providers across the service and delivery chain appears to vary considerably.
At a time where solving health and care problems relies more and more on technology and innovation, and on the potential sharing of datasets across public and private sectors, GDPR has put privacy and patient rights on the top of the agenda.
Data is the vital currency to create, enhance or optimise services, providing new ways to address problems at every level of the health and wellness chain. But that means that providers must be fully aware of their obligations around that data: ensuring that at every step they have captured the business case, recognise the data flows and can show this audit trail to anyone, at any time. The new era of digital health and increasingly data-driven healthcare needs to follow - and potentially improve on - the standards that have been set in place in more traditional medical spheres such as clinical trials.
Who is engaging the patient – or the doctor?
While organisations ensure they are meeting all the requirements around data capture, risk assessment and transparency, it is equally apparent that the key stakeholder in all of this has yet to be fully engaged – the patient.
Let’s not forget that GDPR is about giving patients back control of their data in a clear, transparent and easy way. Control spans many aspects – patients are now meant to be informed, and can ask about what data is collected, who sees it, where it goes and how it is used.
Evidence shows that people are generally comfortable with their anonymised data being used for improving health, care and services, for example for research, provided there is a public benefit. And the more informed people feel, the more they are likely to support these uses. But many are uncomfortable with the idea of companies accessing their health data - in being more open, is there a risk that patients start to ask questions or put up barriers that prevent use of real world data?
GDPR and innovation – the storm before the calm (and opportunity?)
The true impact of GDPR’s focus on data transparency, on both healthcare provider and patient, in terms of innovation will soon emerge. Our conversations with healthcare experts confirm that data exchange is vital to ensure the healthcare system can evolve to provide alternative ways to deliver care to our growing, aging population.
Organisations will need to move quickly from self-management to engaging those whose data they both need and value. GDPR has the real potential to encourage healthcare businesses to adopt new strategies, processes and engagement to differentiate themselves.
You can read more on the interviews on Health XL’s blog on 25th May.
Anatomy Health is a patient support consultancy focused on the design and development of inclusive, accessible and easy to use patient information, tools and services.
HealthXL is a global platform dedicated to connecting people, technology and stakeholders across healthcare to innovate new solutions for health and care.
Update: Anatomy Health and Health XL's article is now published and accessible here.