Delving into Digital: What we’ve learnt so far… By Leonie Harper, Digital Lead, AMRC Published: 7 March 2018 On Monday 26 February AMRC member charities, digital technology companies, and public-sector representatives gathered at the IBM client centre in the South Bank to share stories of the innovative digital health projects they have been working on. We heard a huge variety of case studies ranging from patient support apps, to connected devices, to big data analytics. There was a great buzz about the day, with attendees keen to learn and share ideas. Collaboration is key! Digital health projects are rarely undertaken alone and there was a clear message from speakers: charities shouldn’t be afraid to make the most of their contacts and resources, and when they need it, they should ask for help! We heard from AMRC members who collaborated on digital projects with an array of individuals from industry, the public sector and academia. Opportunities to work with tech and industry Mark Wakefield, Corporate Citizenship & Corporate Affairs Manager at IBM outlined a number of IBM’s philanthropic initiatives, including IBM Health Corps, a global pro bono program focused on tackling health disparities. The program donates £400,000 worth of consulting time and technology access to help organisations improve health access, services, and outcomes. Mark encouraged our members to consider applying for next year’s grant cycle. Kay Boycott, Chief Executive of Asthma UK, provided a charity’s perspective of building public-private partnerships, sharing some very useful tips: Be confident in how you see data and technology meeting priority unmet needs Build digital and data into your organisation strategy, and partnership thinking Allocate funding and senior resource, it shows commitment Recognise that new models mean extra thinking about governance Expectations needs to be clear from the start It takes a long time She ended with a final snippet of wisdom: “People are people, and constantly change. Recognise that when designing digital health services". A digital transformation can start with students Marie-Claire Platt, Head of Operations and Campaigns at Ovarian Cancer Action, described her charity’s experience of working with UCL computer science students to build an app which tackles the challenge of low survival rates amongst women with ovarian cancer – a great example of what small charities can achieve on a shoe-string budget. If your charity is looking for help with Apps Design or Data Science projects, the UCL Industry Exchange Network may be the answer. You can find out more about the network at their public showcase on Tuesday 24 April 2018. How can you collaborate with the public sector? Dr Hakim Yadi, CEO of the Northern Health Science Alliance, gave a jaw-dropping look at health inequalities across the UK and how the Alliance’s use of Connected Health Cities is helping to reduce these. Connected Health Cities work by safely and securely linking data together from different services to better serve patients in their city regions. The information can then be analysed to understand where problems exist in current pathways and develop appropriate solutions. Hakim described the project as “a big people project, not a big data project” and highlighted the importance of working with the public and inviting the patient’s voice in their research, welcoming the input of our sector. Chris Geary, Innovation Lead of Digital Health at Innovate UK, explained how the Digital Health Technology Catalyst supports SMEs to realise the potential of new technologies, develop ideas and make them a commercial success. He urged our members to get in touch to find out how they can get involved. Digital is leading to patient empowerment With many smartphone apps and digital platforms providing medication reminders and tracking health, patients are gaining control of their conditions by being able to understand and effectively manage their treatment. Sammie Read, a CF patient, discussed how the CF Trust’s home health technology helps her monitor her condition and reduce the burden: “Home monitoring leads to better management of conditions and less time stuck in traffic jams on the way to meeting medical teams face to face! It helps to put patients in control of their disease”. Making the case for patient data David Aaronovitch, a columnist for The Times, shared his experience of developing septicaemia in hospital after a medical operation that went wrong: “I didn't need to nearly die. By the time I'd been diagnosed, my chances of survival were as a low as 10%! When you think about digital it immediately becomes apparent that a lot more can be done”. He also expressed his frustration at the lack of data sharing across the healthcare system: “It actually makes me angry when my health data is not shared and patterns are not spotted. Why the hell is nobody trying to learn from my data to make things better for others in the future? If you can’t cure me, learn from me”. He explained that fear over commercial access to data is unlikely to be a key priority for patients: “What I wasn’t thinking as I lay in bed in hospital was ‘Oh my God, the insurance companies might get hold of my records’”. In the final session of the day, Nicola Perrin, Head of Understanding Patient Data, made three suggestions for charities making the case for patient data as a tool for change: We need to talk about the benefits of patient data We need to be able to explain the ‘why’, while recognising that there are concerns, and what the safeguards are We need to start a conversation with our members and beneficiaries – go out and talk about why this is important! Jess Sass, Project Business Analyst at the Brain Tumour Charity, works on the charity’s BRIAN data registry as well as living with a brain tumour herself. She highlighted the importance of showing that there is a willingness, even demand, amongst patients for data sharing. The Brain Tumour Charity carried out a survey on the impact of living with a brain tumour: 97% of participants said they would consent to sharing data, even if it meant they could be personally identified. Similarly, at the CF registry, they have 99% consent, and it is rarely withdrawn. Wrapping up Delving into Digital 2018 certainly lived up to expectations, demonstrating how our sector can navigate the digital space to bring benefits to patients sooner.