By Lotte Coppieters, Digital Project Manager, AMRC

Published: Wednesday 24 April

On Wednesday 27 March, we had our annual Delving into Digital conference which threw up a clear theme – collaboration is key. Many highlighted the fact that there had been a noticeable shift towards this, with Paul Thomas (Digital Advisor, Microsoft Ltd) saying that NHS professionals used to react with “What do you know about health?”, but that now the attitude is all about collaboration. But there is something more that is needed to guarantee the long and fulfilling relationship we are all looking for. As Julie Dodd (Director of Digital Transformation and Communication, Parkinson’s UK) highlighted in her closing remarks, it is not just simply about collaborating anymore, but rather about the kind of relationship. So, what should be considered? Luckily for us, lots of our fantastic speakers helped us to start to think about this.

More than just swiping right

As Aisling Burnand, our CEO, put it in her opening speech, more is needed than grabbing onto the latest, shiniest technology. Instead, what is under the surface is more important – is it effective? Is it sustainable? Accessible to all that need it?

The fact that it’s not all about technologies was further brought home by Emma Lawton (Creative and Digital Strategist, Parkinson’s UK) raising that technology is not the end but is instead the means to an end which is helping people to live the lives they want to.

Indeed, Marianne Williams’ talk (Specialist Gastroenterology Community Dietitian, Somerset Partnership NHS Foundation Trust) demonstrated perfectly that even simple technologies can have a huge impact, in this case webinars they have developed to inform patients about nutrition, IBS and coeliac disease. They have increased patients’ understanding, with 96% rating their knowledge as fair/good/excellent post-webinar compared to only 52% pre-webinar, which has in turn reduced referrals to the gastroenterology unit by 50%.

So, if it’s more than technologies’ looks and charisma, what is it about?

Building a deep connection

Autistica offered us a perfect example of how to foster a strong and positive relationship. They have spent a huge amount of time and care building a set of core values underlying their new citizen science project, put together with the Alan Turing Institute and input from the autistic community. Critically, they ask all collaborators to subscribe to these values which cover impact, participatory science, transparency, data protection and consent, open source, diversity and inclusion and respectful conduct.

The guidance we launched at the event offers a toolkit that can be used to develop such a framework of values that give collaborative projects a mutually-understood foundation. This includes:

• applying principles for collaboration
• aligning on the approach to patient involvement and a core mission
• developing a set of ethical principles for the project
• asking key questions around ethics to ensure alignment

The sessions at the event also showed that having a collaborative partner with a personal connection can also add a lot. Emma Lawton (Creative and Digital Strategist, Parkinson’s UK) and Jess Sass (Jess Sass, Business Analyst) demonstrated their unique insight as patients working on projects relevant to their condition – for example, Emma captured perfectly in a slide why digital technologies are critical to patients:

This can also be seen in tech companies, with Paul Thomas (Digital Advisor, Microsoft Ltd) citing the example of Microsoft’s soundscape project which was kicked off by Amos Miller who has a genetic eye disease that led to total sight loss.

Which nicely leads onto a third partner with whom a deep connection should be built – patients. And patients being involved not only as the end user, but also as active decision-makers that drive and define the work happening in the collaboration. This was a clear theme that came up time and time again throughout the day.

So… are we exclusive?

You’ve gotten over the first date nerves and, regardless of how the tech appears on the surface, you’ve established it’s fit for purpose. And you’ve realised you and your partner(s) share the same values and passion for each other… and the project. So it’s probably time for the talk – are you exclusive, or not?

As was highlighted in our disrupters panel discussion (#womanpower), there can be some tension born out of the nature of the tech world. Sarah Haywood (CEO, MedCity) said that within the investment space, it is very difficult for startups to do anything open source, as they need to demonstrate their unique value as an investment.

Meanwhile, as we touched on earlier, one of Autistica’s core values that collaborators (including Fujitsu) have had to accept is the fact that the project will be open source. Indeed, we highlight ‘Open research’ and ‘Community mindedness’ as two of the nine core principles in our ethical framework.

But perhaps a community mindset does not necessitate a fully open-source approach from tech companies – you can still build upon value gained from previous projects to accelerate new ones. For example, Nira Goren (Senior Clinician Strategist, Deepmind) and Sheena Visram (NHS Navigator) discussed how they iterated the Streams app that DeepMind had developed for the Royal Free for use at Imperial College Healthcare hospitals. And Vicky McLaren (IT and Digital Programmes Manager, Pancreatic Cancer Action) and Ifty Ahmed (Co-founder, Healthbit) talked through personalising the Healthbit app for pancreatic cancer.

So, ultimately, there are a variety of partnerships out there, but it’s up to you to define what relationship is right for you.