Connecting with people on data use is the way forward

Written by: Zahid Deen, Digital Health and Care Strategic Lead, the ALLIANCE
An illustration of a cake, with the following layers (from bottom to top): Trust and Security, Awareness, Understanding, Access/Contribute, Choice, Benefits of data for me. The candle is an 'I'. On the sides appear the words 'Multi channel' and 'Simple'

Conversations with the public on data use in healthcare has surfaced some points we need to start addressing to fully exploit its potential.

Facebook and data use have been all over the news.  Suddenly people everywhere were tweeting about their realisation that they were under ‘surveillance’ by social media, wondering if Facebook might know too much about them and whether their data was shared with or accessed by third parties. Just last week it was also reported that Facebook had reactively halted plans for a research project that would have collected patient data from hospitals in the USA and matched it up with its users’ information.

But for me, the overriding issue is how an organisation that professes to be all about connecting people also seems to be disconnected from people (and their understanding) on how their data is used. And in this case, the very people who are content generators for Facebook and its ‘product’.

The issue of ‘connecting with people on data use’ isn’t just important for a social media giant, but for healthcare in Scotland too.  Getting it right could help ensure we fully exploit data’s potential to transform individual outcomes and our wider services.

By highlighting the issue, we’re trying to start a wider and deeper dialogue with the Scottish public on what matters to them on data use.  This should eventually become a vital complement to the discussions about data sharing currently taking place within and between organisations. For now, these tend to focus on legal, governance and technical systems that allow data sharing – all topics which appear less engaging for the public.

So, we decided to try a different approach. After the recent release of our brief explainer video on data use, we ran a few workshops to see what people’s thoughts were on the topic.  It’s early days, but there seem to be common points emerging, which resonate with findings from wider relevant surveys. People are telling us that:

  • trust and security are very important – the ‘foundations’ on which data use depends.  Fortunately, most people do trust our healthcare services to use their data appropriately, but there are still some concerns usually linked to security, as well as confidentiality.
  • awareness and understanding must be improved.  Many people haven’t heard much on how data is used in healthcare including initiatives like SPIRE, which makes use of data from GP practices in Scotland (this link will take you away from our website).
  • they want to access data from their medical records to support self-management. Some also want to contribute personal data to improve the care they receive.
  • they need clarity on their choices. People want to know what options they have with regards to their data being used for wider research and service improvement.
  • the benefits of data use must be better explained. The question on people’s minds is ‘how will data use help me or someone I care for?’ Some went even further, asking for reassurance that their data was being proactively used to its full potential or that it was being linked with other sectoral data. For instance, connecting data between the health and housing sectors may give a wider view on determinants of health and wellbeing.

Also, embedding accessibility through all of this is seen as crucial to ensure inclusivity. That means obtaining easy to understand information about safeguards, security, consent options and the benefits of data use. This information needs to be communicated through multiple channels, digital as well as offline methods, to reach people who aren’t internet users.

This issue isn’t just topical because of what’s in the press, but also due to the imminent publication of the Scottish Government’s first Digital Health and Care Strategy, where data could be a focus.  Hopefully this strategy can spur a broader public conversation on data and collaboration on the issue.  Watch this space as we will publicise what happens and any opportunities that brings.

One image might be to view data as something in which we can add our individual ingredients to produce a potentially glorious and mutually benefiting collective cake.  If we can get connected and contribute to it, surely, we will then be able to discuss and improve the recipe, as well as getting to taste a slice!