To bring together parliamentarians and senior health and technology leaders to highlight the benefits that successful use of data and digital health technologies can bring to the NHS, to patients and to the UK economy.
There is no doubt that data and the use of digital technologies is a significant driving force in shaping today’s society and economy. Digital technologies have transformed the way we work, shop, and socialise.
Increasingly, but lagging behind sectors such as retail and finance, these technologies are being implemented to support healthcare delivery, identify unmet needs, measure outcomes and shape services. There is also the potential to manage demand for health and care services by engaging citizens in playing an active role in their care.
Indeed in reading the NHS Long Term Plan the significant use of digital technologies underpins delivery and success.
Digital health refers to the myriad of approaches that bring to bear the potential of digital technologies in improving health, care delivery and patient experience. Those technologies encompass a wide variety of tools, but one common thread is data and how the growing body of data is collected, aggregated, analysed and acted upon. Thus, a key need in the digital health space is the availability of usable data to provide the “fuel” for generating value. This in turn relies on building trust with patients and public.
1. Public trust and consent
In order to build public trust for data sharing, HMG should deliver a wide ranging public communications programme. This would inform citizens of the benefits to themselves and others of sharing data in the development and adoption of new technologies and treatments.
here has been some excellent work undertaken with citizens juries, the scope of these is limited. A broad-based campaign, could build general awareness of the benefits of data sharing and mitigate the risk of citizens feeling excluding from the discussion. Patients should be consulted to ensure that an appropriate and transparent system is in place and trust is built in the data governance system.
The APPG is scoping work in the following areas:
- Synthesising the significant research already undertaken into public attitudes to sharing NHS/citizen data
- Full evidence inquiry involving various leading organisations and individuals to develop a full report
- Building a collaborative approach with Royal Colleges, patient organisations and third sector
- Recommendations to government on the need and methodology to deliver a broad based communications campaign.
A robust, transparent yet agile regulatory regime can underpin the safe use of digital health technologies and provide the platform to build p[public trust. Digital health products iterate at a rapid speed, in some cases every time the technology is used and the user or system inputs more information into an algorithm. Regulators need to be able to have confidence in their ability to protect patient safety. However, traditional processes do not allow for this speed of change while ensuring patients’ access to life saving technologies.
A position needs to be developed on digital regulation that sits within broader recommendations for a future regulatory regime for medical devices. However the regime needs to go beyond the product and algorithm and ensure the necessary security of data and the safety of patients remains central to any digitally enable clinical service. The APPG will be hosting a roundtable using these recommendations as a framework for discussion with a number of stakeholders, followed up by a report recommending next steps. This work could help ensure that UK patients can have timely access to innovation life saving services and technologies.