Delving into digital is no longer a distant dream for medical research charities. It is increasingly becoming a reality. To survive and deliver what patients, relatives and carers most need we have to be future focused.

To that end on a snowy day in February AMRC (Association of Medical Research Charities) 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 and learn from each other.

There was a huge variety of examples ranging from patient support apps, to connected devices, to big data analytics. What a great buzz – but with a clear focus and desire to learn and share ideas.

Collaboration is key!

Digital health projects are rarely undertaken alone and there was a clear message: charities shouldn’t be afraid to make the most of contacts and resources, and when they need it, they should ask for help! Collaborations show a great variety of innovative partnerships – individuals, industry, public sector and academia all pairing up with charities.

Opportunities to work with tech and industry

Mark Wakefield, Corporate Citizenship & Corporate Affairs Manager at IBM outlined the philanthropic side of what they do including 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 charities to consider applying for next year’s grant cycle.

Kay Boycott, Chief Executive of Asthma UK, is focused on building public-private partnerships, for people affected by asthma. She has 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

Perhaps what resonates most is that we must expect to be flexible. She said: “People are people, and constantly change. Recognise that when designing digital health services”.

Digital transformation can start with students

Marie-Claire Platt, Head of Operations and Campaigns at Ovarian Cancer Action, has been working with UCL computer science students to build an app which tackles the challenge of low survival rates amongst women with ovarian cancer. Her project is a great example of what small charities can achieve on a shoe-string budget. If you are looking for help with Apps Design or Data Science projects, the UCL Industry Exchange Network may be the answer.
How can you collaborate with the public sector?

Dr Hakim Yadi, CEO of the Northern Health Science Alliance, gives a jaw-dropping picture of health inequalities across the UK. The NHSA is using Connected Health Cities to change the picture. Connected Health Cities safely and securely links data 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 describes the project as “a big people project, not a big data project” and highlights the importance of working with the public and inviting the patient’s voice into research.

The Digital Health Technology Catalyst supports SMEs to realise the potential of new technologies, develop ideas and make them a commercial success. Charities can get involved – they just need to get in touch.

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, tells us 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, developed 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 expresses 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 explains 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 that snowy day in February, Nicola Perrin, Head of Understanding Patient Data, made three suggestions for charities making the case for patient data as a tool for change:

  1. We need to talk about the benefits of patient data
  2. We need to be able to explain the ‘why’, while recognising that there are concerns, and what the safeguards are
  3. 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.

Research charities know they have to look at new and better ways to help people. The Delving into Digital day demonstrated that our sector can navigate the digital space to bring benefits to patients sooner.

By Carol Bewick, Head of Membership Engagement and Communications, Association of Medical Research Charities (AMRC).

The AMRC was part of the NCUB Digital Health and Care Task Force, which published its recommendations to drive digital skills in the health and care sector in the report below.

Read the report: