ABHI Membership

ABHI at 30 Guest Blogs. Navigating the Digital Landscape with Medical Research Charities

The traditional view of medical research charities is that they fund basic scientific research. That is no longer the name of the game. Charity 2.0, as we think of them, are at the cutting edge of development, putting patients at the heart of what they do and how they spend their money.

Recent advances in technology and big data are opening up many exciting new opportunities for charities, both to accelerate research as well as to drive improvements in patient care and treatment. Each day new articles abound demonstrating where technologies such as artificial intelligence (AI) and machine learning will advance healthcare. Whilst AI often grabs the headlines, there are many data-driven technologies on the horizon, some of which are close to becoming more generally available. Examples include improved diagnostic tests as well as virtual tools and health apps which are capable of revolutionising care and transferring greater power to patients to self-manage their condition. For example, Autistica UK, the UK’s leading autism charity, recently launched Molehill Mountain, an app to help autistic people understand more about their anxiety.

With the immense potential of health technologies, it is unsurprising that charities are investing significant resource to develop these innovative new tools. A recent Association of Medical Research Charities (AMRC) report revealed that charities invested £380 million between 2015 and 2016 to develop health technologies and of AMRC’s over 140 members; almost 80 of them are funding research in this field.

Driving the success of many of these technologies is data, and famously AI is underpinned by algorithms which rely upon learning from vast swathes of it. The UK has a rich and unique health data source in the NHS, reflecting its cradle-to-grave service and the diversity of the UK’s population. For researchers developing data-driven tools to better understand the causes of ill health and develop treatments and cures, this is an incredible resource.

Moreover, the responsible use of patient data has already helped progress our understanding of disease and ill-health in many different ways. A study funded by Kidney Research UK using data from the UK Renal Registry and hospitals found a pattern of hospitalisation amongst kidney patients that led to new recommendations for clinical practice. In cystic fibrosis (CF), a registry of patient data led to the development of essential new treatments. Data from the CF Registry is also proving an effective tool in the development of new technologies by CF Trust under a program called SmartCare CF.

What might the future hold?

It seems inevitable that technologies such as artificial intelligence will redesign healthcare with vast numbers of private organisations beginning to focus on designing AI tools for the health sector including big players: DeepMind, IBM Watson and BenevolentAI. There are also many smaller players such as the ambitious Sentrian, a start-up harbouring the ambition of developing algorithms that can predict illhealth prior to the onset of symptoms.

For healthcare delivery, the realistic wide-scale implementation of AI in the next few years will likely be in the areas of app development for diagnostic purposes and the implementation of personalised support and treatment regimes. Whilst AI may not be used widely across the NHS straight away, charities have started to take the risk of working with big date., Asthma UK, for example, is partnering in a program called myAirCoach, which is focused on developing self-management tools involving the combination of a ‘smart’ inhaler and app for a smart device. The inhaler will contain a number of sensors which will record how well people are taking medication as well as small changes that they may not notice. In the future, it may even be possible to embed these tools as a means of linking asthma patients with their healthcare professionals.

And they aren’t the only one. Arthritis Research UK, for example, is developing an AI-based virtual assistant in conjunction with IBM for people with musculoskeletal conditions to support self-management. Additionally, Parkinson’s UK and The Cure Parkinson’s Trust are partnering together with AMRC supporter BenevolentAI, to develop new treatments for Parkinson’s patients. This followed the charities partnering to win the inaugural Benevolent AI award, a competition run through with AMRC especially aimed to benefit medical research charities and the people they serve. The charities will now benefit from BenevolentAI platform’s capabilities to reason, deduce and suggest entirely new treatments for Parkinson’s patients.

While data is fundamental to developing these exciting and life enhancing innovations, many of these connected apps and tools will require improvements in the digital preparedness of the NHS, to fully realise their potential. This will require implementation of appropriate data standards as well as ensuring that data is joined up across the different areas of the NHS. By doing so we can then harness the world-leading uniqueness of the NHS dataset to both develop and maximise the potential of innovative technologies, which will benefit patients as well as ease pressures on the NHS. A number of our member CEOs have recognised the challenges of moving into this space and recognise the need for and power of collaboration. To that end we have all signed an agreement to prioritise partnerships in this area to address unmet need and co-work to surmount potential barriers to success. There is a hunger to get things right – but by innovating responsibly.

We know that patients collect data about their health every day, we all do. Innovations in digital health tech are becoming part and parcel of what AMRC members can and should deliver – often at speed. Our challenge is ensuring we can empower our members to use data and partner with those across sectors in an ethical, safe and innovative way. It’s a challenge we accept.

Aisling Burnand, Chief Executive, Association of Medical Research Charities