People Make Data: Part 3

I am very excited to share this post with you today! It is the third of our People Make Data series and this time, Pete Wheatstone talks to us about sharing patient data from a patients perspective.

I had the pleasure of meeting Pete at the end of 2019 at a useMYdata workshop in Leeds, where we got to talking and realised that we had in fact already met on Twitter?! Pete is a former cancer patient and a member of useMYdata (who we heard from in People Make Data: Part 2). Pete is an extremely active and experienced Patient and Public Involvement (PPI) representative for a number of data research programmes. These include, the UK Colorectal Cancer Intelligence Hub Patient Public Group; Chair of the DATA-CAN (the HDR UK Hub for Cancer) PPIE Group; National BOwel Cancer Audit Patient & Carers Panel; IQVIA Patient Group, the National Institute for Health Research (NIHR) Royal Marsden/ICR Biomedical Research Centre (Digital Theme); Cancer Research UK Patient Data Reference Panel; the European Institute for Health Innovation Through Health Data (i-HD) and an association with DataSavesLives.eu (through i-HD) – to name but a few!

Pete’s contribution to the promotion of the safe use of patient data in research is second to none and it is a real privilege to have him offer his insights in his post. In his neat analogy that follows, Pete helps us really get to the bottom of what sharing patient data is all about.

“We’ve been sharing information since before language was developed”

At a most basic level, creatures that live in groups, from insects to humans, share information between themselves such as the presence of danger and the location of food. This is because it is a good method of protecting the group and helping it to flourish. Whilst living in caves, our gestures, grunts and groans gradually became more sophisticated allowing us to share more detailed information that evolved into language. However, even today ninety percent of our communication (and therefore information) is still non-verbal. You can tell things about a person just by such things as their facial expressions, how they sit or move their body, their tone and volume of voice, the level of eye contact. We all sub-consciously and consciously do this to enhance the communication of our thoughts and feelings. It helps us to form relationships and friendships. Surely, acquiring information is the reason we send our children to school and why we study. We exchange information about our  thoughts and our feelings when we socialise.

But when it comes to personal medical information this is, of course, a little bit different – or is it? Whilst many of us like to share some of this information, there may have some aspects that we feel we want to keep to ourselves. Of course, it is our right to keep that information to ourselves if we wish or tell a trusted person in confidence.

Medical data is just bits of information held electronically. But information, when held as data, can be easily shared with others for both benefit and, potentially, disadvantage. However, if that data is anonymised (in other words all information is removed that might identify us) and it is added to information from thousands of other people, might we hold a more relaxed view? And if that data was only accessible by trusted people, authorised to access that information only for a very specific and approved purpose should we have any substantial concern?

As current or future patients, we benefit from improved treatments and services because previous patients shared their medical information. Do we not, in turn, have a moral obligation to share our information to benefit our children, grand-children and future generations of humanity?

I believe that, providing the current legally required data security controls in place and those that hold the data are open and transparent (about who data is accessed by and why), there is no logical reason why we should not share our anonymised medical data – for the benefit of us all.

Leave a Reply

Your email address will not be published. Required fields are marked *