As all of you in this room know, there are huge benefits of using data responsibly to
improve health and care.
You’ve heard about the importance of joining up records from GPs, hospitals, care homes
to provide much safer and more effective care.
But there’s also a huge number of other uses from understanding more about disease,
improving diagnosis through to monitoring patient safety.
Why are we seeing all the bad news when there is so much patient benefit as well?
And I think it’s partly because of the lack of awareness about how the NHS uses data at
the moment and yet in general, the more information people have, the more comfortable they are
with data being used for wider purposes within the NHS.
But there’s a slight caveat, if you give just a small amount of information, you actually
raise concerns.
These are issues that people haven’t thought about at all and suddenly they have a lot
of questions, they have a lot of concerns and it’s only when you can give enough information
that people feel reassured that this is actually an important thing and it’s really necessary
for the NHS to function efficiently.
I would argue care dot data got us right up to that peak of concern and kind of left people
hanging there, and that’s certainly why understanding patient data has been set up.
We’re a new initiative to support better conversations about how health information
is used.
We want to provide objective evidence to help the public, the patients, healthcare professionals
understand how and why data is used, what’s allowed, what’s not allowed and how personal
data is safeguarded.
It’s really important to everyone that there’s a public benefit and that’s why it’s so
important to talk about the why and the purposes of using data.
Can I be identified?
This is one of the first things that people ask.
People traditionally think either end of the spectrum; data is either fully identifiable
or it’s anonymous and you wouldn’t be able to identify somebody.
What we want to help people understand is that there’s a grey area in the middle where
it’s still information about an individual but it’s been de-identified.
The identifiers have been removed.
By thinking of it as a spectrum, with a photo of somebody as an identifiable person, a blurred
photo of somebody for de-personalised information and then a group silhouette photo, a silhouette
picture where it really is clear that you couldn’t identify somebody, it really helps
people get this concept.
And people really go the concept that you’ve blurred the photo but if you had enough time
and resource and motivation you could in theory get back to the identifiable data, particularly
if you have other information or existing sources of data that provides a bit more information
so you can piece together the information and help unblur it, as it were.
The other thing that people always want to know is, will companies have access to data?
And there’s almost a knee jerk reaction that commercial access is bad and we wanted
to unpack in a bit more detail whether or not it really was so black and white or whether
or not there was nuance in the middle of this as well.
There was a large survey of over 2000 people, which found that actually more people supported
than opposed commercial access and that figure went up if there was no other way of conducting
the research, if the commercial option was the only one otherwise the research wouldn’t
happen, then 61% of people were supportive.
But really importantly, there is a significant minority of people 17% that didn’t want
commercial access under any circumstances, which is why an opt out approach really seems
to be the most appropriate.
But this was a high level survey.
We also did a number of focus groups to really sort of unpack some of these issues in a bit
more detail using a number of case studies, and what we found was that the purpose was
really the most important thing.
People had four key tests, they wanted to know why the data was being used; who was
using it; what kind of data; and how it was used.
But really, the first and most important was that why.
If there was a public benefit, then they were much more comfortable with the data being
used.
And if there was mix of public and private benefit, then it was a bit more acceptable.
They would have a conversation about the who and why and how.
Solely private benefit, people were very uncomfortable with and I think that explains why insurance
companies accessing data raises so many concerns, but I think we need to get much better about
talking about all the different uses.
Software providers just for GPs to use electronic health records, they have a lot of control
of data and they’re using.
Analytic services again, working for the NHS, but it’s still a commercial access to data,
and it’s important that this is commercial access rather than necessarily commercialisation.
So they’re not necessarily making a profit from the data.
But pharmacies, private health providers, there’s a lot of different companies out
there using data and we need to be much better at talking honestly and openly about those.
We want everyone to be able to talk about why it’s important to use data, that data
has to be kept safe, that there must be transparency and we all need to get much better at helping
people find out how patient data is used and why.
Thank you.