Listening and learning – lessons and insights from the GIANT health conference

The GIANT Health festival of health technology is perhaps one of the more vibrant and engaging health technology conferences in the UK, offering a fantastic mix of organisations from start-ups right through to the big corporates all coming together and linked by a common thread.

Taking place over two days, the event is a great opportunity to meet industry leaders and innovators from across the health sector, as well as learn more about everything from the next generation of health IT solutions to devices and genetic testing. was delighted to feature in the  “Health Information Systems 4.0” session of the Expo, organised by I-Expand, taking part in a panel talking about future models of health IT.

Pilar Fernandez Hermida, founder of I-Expand and curator of the track, decided to place the topic of patient privacy  and rights high in the agenda.

She said: “Moving into 2020, most hospital health records still operate in silos.  Meanwhile, a tsunami of data from medical apps and wearables is highlighting the need for integration and interoperability  with the health records.

“Patients want to be more engaged and have access to their information. This new model brings its own challenges in terms of data and privacy rights.”

There were many fascinating subjects raised and discussed, but from the innovators’ session it was clear that one growing trend is a greater focus on privacy with companies wanting to minimise their data (in some cases to zero) to reduce their compliance exposure and instead focusing on the service and value they provide.

This is certainly a common theme across industry as a whole, but healthcare with its organisation-centric models has perhaps been slower to adjust to the changing and more citizen/patient centric models steadily becoming more prevalent today.

In the UK, we have a potential huge opportunity to be leaders in digital health, but due to the current challenges with the digitisation of our healthcare service, in particular, the commercial models and inability to easily access data, many innovations struggle to gain traction and even die off without reaching anywhere near their full potential.

While this landscape remains vast and complex, is making progress on liberating the data from healthcare systems, not just in the UK but around the world, putting it in the hands of individuals to empower them and enable them to share it on their terms. This opens up a whole range of new possibilities when it comes to health innovation and research and was a key talking point of the panel session.

It was clear from the conference that these new patient/citizen centric models are rising up the agenda and it was fantastic to talk to so many providers seeking to empower individuals, many of them with privacy at their core.

One particularly interesting company was CircaGene, which provides a consumer genetic testing service with a new privacy centric model which seeks to empower the individuals with their data and advice rather than exploit their data.

Encelo, meanwhile, is an innovative device that allows individuals to gather cells for a bio bank at home thus enabling them to collate their own data and samples which can then be used for research.

As more and more of these services become affordable and accessible to individuals, the data they enable them to build up about themselves will become extensive, far greater than traditional medical records.

Where is my definitive record
Slide from the ‘Empower the patient and everything else follows’ session

It is, therefore, increasingly easy to imagine a world where a ‘people powered’ revolution starts to shine through and we see the democratisation of the health space with individuals enabling a greater breadth and depth of innovation and research.

One of the challenges facing universal healthcare systems is how we ensure that the UK keeps pace with the rest of the world, at the same time as ensuring those who depend on state provision do not get left behind as the ‘consumer’ world of health accelerates.

To this point, the conference was a hive of activity but sadly lacked NHS attendance, who seemingly favour more traditional health IT conferences where NHS leaders project their vision and industry tries to work out how to enable it, but often the patient/individual is not in the picture..

However, the ‘people powered’ revolution is fast approaching and cannot be ignored. The UK needs to respond and rise to this challenge or risk being left behind.

Iceland, for example, was the first country to open up a national citizen API for medical records. The US has its meaningful use programme which requires hospitals to open up data to patients. Now the Netherlands, too, is not only opening up the data to patients via APIs, but also has a commercial model which would see qualifying app vendors receiving up to €7.50 per patients.

As other nations race ahead to empower individuals and make their countries exemplars for digital health, the UK’s troubled history with health IT seems to be holding it back. Yet there is enormous potential and the opportunity to be a global leader if we just open up the health service to greater technology and innovation collaboration.

To help assist this, is working across the health sector, collaborating with a number of partners to establish a community of best practice around the use of personal data for which it is seeking new partners as well as contributors.

To celebrate the health community launch, held a £100 Amazon voucher prize draw during the event for those who signed up. Congratulations to winner Claire from Patient Safety Learning, a charity and independent voice for improving patient safety. She said: “I had a fantastic time at the GIANT conference, it was a great place to network and to see tech solutions to patient safety problems.  I will be adding two patient safety books to my collection that I have had my eye on for a while!  Thanks so much!”

If you have a personal data need or would like to discuss how can work with you on health IT solutions, please get in touch with me.