Mind the Gap By Aisling Burnand, Chief Executive, AMRC Published: 16 October 2018 Visualise the London tube map. Each of the lines represents a different source of research data. There is some overlap and some places you can change, stop and get assistance but currently there is a serious lack of simple connections. The tube map is complicated isn’t it?! Well the data reality equivalent is - as a lay person - 100 times more complicated than this, with many of us feeling that we are stuck on the Circle Line unable to get off or make progress. The loss to society of not joining up data and making better use of it is a travesty. Failure to link data has real world consequences such as the tragic case of 13-year-old Tamara Mills who had a fatal asthma attack in April 2015. When the coroner investigated, he found in the 4 years leading up to Tamara’s death she was seen 47 times by medical professionals in different parts of the NHS and that linking her records could have allowed doctors to treat her differently and perhaps prevented her death. We all know the potential data holds to transform lives and yet there are big challenges on the journey which we are not grappling with fast enough. I like Asthma UK’s CEO Kay Boycott’s data analogy: The current status of health data is like that of a teenager: growing like a weed, revealing both brilliant insights and unintelligible rubbish and in need of careful parenting to guide it through new territory. Given the right nurturing environment, incentives and clear boundaries health data and digital can and should grow to its full potential. Yet there are significant barriers or gaps we should be mindful of. If we don’t mind the gaps, lives will continue to be lost, research stalled, and our health service won’t reach its full potential. By addressing these gaps, we can continue our journey toward a truly 21st century healthcare system. Pace of change vs the current reality In many aspects of our lives data and technology has made a big impact - in banking, commerce and mobile tech. From where I sit, I am greatly frustrated that our data systems are slow in delivering data for research and care. There is a distinct lack of urgency being exhibited by all players in the health space to invest in a data driven health environment fit for the 21st century. For example, there has been a lack of firm guidance and advice from the national data controllers (NHS Digital, PHE) in using the Cloud to store health data. Microsoft Azure, a Cloud storage platform was launched in 2010, and has some of the most advanced cybersecurity available on any platform, yet our national data controllers are still grappling with the implications of this technology. We shouldn’t be lagging years behind new trends, we should be aiming to stay ahead of the curve. Tessa Jowell was diagnosed with a brain tumour in May 2017, she died in May 2018. Tessa was a passionate advocate for sharing data. However, in the same time between Tessa’s diagnosis and death, one of our member charities, The Brain Tumour Charity, was unable to collect dummy data from relevant public organisations to launch their new data registry. While it is important that we ensure there are robust safeguards in place to mitigate risks, we must avoid excessive delays that waste time patients such as Tessa simply don’t have. Most patients believe the benefits of data sharing outweigh the risks. Whilst all want their personal data to be handled responsibly a recent Brain Tumour Charity survey said 97% of patients would consent to sharing their data, even if it meant they could be personally identifiable. Research funders also struggle with significant delays to data access. Many of our charities have experienced significant delays ranging from several months to over a year in accessing data from national bodies. This means that charities are wasting valuable resources in funding researchers who are left idle as they wait to receive data. Furthermore, I’m told that accessing mental health data for research is even harder which seems counter-intuitive when mental health is a key government priority. Inadequate public conversation about data There are 65 million people living in the UK however we have barely made a dent with our attempts to engage them in conversation about data sharing over the past few years. This is despite the valiant efforts of Understanding Patient Data and many of our member charities. Charities and patient groups are relied upon to bring respectability and trustworthiness to the arguments for data sharing with the public. However, it’s unfair to expect them to do this alone as they don’t have the resources to run and maintain an ongoing national conversation. Charities are key partners, but we all need to step up to the challenge. Additionally, given so much of the Government’s Industrial Strategy is dependent on data and tech, the short-sightedness in failing to invest in a meaningful national conversation is something I fear we shall live to regret. Past experiences show us that when we invest in discussions about complex topics with clear benefits, society listens. Just look at the discussions around genomics, biobanks, stem cell research, mitochondrial donation which through dialogue and discussion are not being held back. Before we even begin thinking about the right commercial models for sharing health data, we should be engaging the public in a wide-scale national conversation about the fundamental benefits of health data. When Monsanto decided to push its new GM product with little benefit to you and me but plenty of benefit to their pockets it triggered a massive backlash. They did not lead with the benefit of GM to society. They did not make the case. Zeneca had already successfully launched a GM tinned tomato which had been flying off the shelves. Customers liked it. Sadly because of the Monsanto incident the tinned tomatoes were withdrawn. GM technology has spent the last two decades in the wilderness all because someone decided to put profit before public benefit. Guiding values I don’t know what a fair return for the public's contribution to data will be, nor what the appropriate return for a commercial organisation who uses and adds value to data should be, yet I do know that we must get this right. I believe there are important guiding values: Choice - let me decide who has information about me Care - treat my information with care Competence - handle my information according to the rules Clarity - on who uses my information and for what purpose Co-creation - with patients and people with lived experience not for them Collaboration - develop shared pragmatic solutions to new challenges brought by data and digital health research & innovation. One of the four principles AMRC have signed up to in the discussion document “Promoting More Effective Partnerships in Digital Health”. I liken our journey toward a joined-up, 21st century healthcare system to the improvement of our tube network. It is an ambitious and ever-changing project that requires significant money and is naturally often behind schedule. There are clearly challenges and there will undoubtedly be more, yet if we stick to these guiding values we will be well placed to deliver our ambitions, much in the same way that we hope tube upgrades will improve our journey over the coming years.