By the Understanding Patient Data (UPD) team.
In August, Natalie and Tariq announced some changes to Understanding Patient Data’s funding. UPD is currently based at Wellcome, but due to a new strategy Wellcome won’t continue to support the programme after the end of 2022.
So, we’ve been looking at all the different options for the future of UPD, which is why we’ve been a little quiet. Now is a good time to update you on what’s happened and what will come next.
What’s changed since our last update
We have spoken to a wide range of organisations across the patient data community over the past few months, who recognise the value of UPD's foundational policy, communications and engagement work. However, we have not managed to find a suitable home for the full Understanding Patient Data brand and programme of activities.
We know that one of the things people most value about UPD is its independence—and we wanted to be sure that would be maintained if it was to continue. With that in mind, it’s clear that there isn’t a natural home for UPD to carry on in the same way.
So, what will the team do next?
The first thing to mention is that Natalie has decided to move on and will be leaving at the end of October. She’s written a thread of her reflections. We’re incredibly sad to see her go—as a team we’ve really valued her leadership and have seen the programme flourish under her management. The very supportive response we received following the news about the changes to our funding really is a testament to her brilliant work.
The majority of UPD staff have now moved into Wellcome's Data for Science and Health team. From now on, we will not continue our UK health data policy work. Although we won't be actively engaging in policy developments, we believe our resources and thinking will still be useful to the policy community.
Our focus into 2022 will be delivering on the important projects we already have in the pipeline, including:
- a couple of new resources, on how to explain pseudonymisation and why big datasets are crucial for research
- an easy-read guide about the need for big datasets in health research, co-designed with people with learning disabilities
- a project explaining how data is used to develop the R number for Covid-19
- a project with the RCGP on primary care professionals’ attitudes to data use
- research on equitable data collection with Black and South Asian people
- work with health charities on explaining how the use of patient data informs the health information they provide for their communities.
It's over to you now
We know that we won’t finish our mission by the end of 2022. Making the use of patient data more visible, understandable and trustworthy is a big job—and one that will continue far into the future.
Our goal has always been to build and support the community of people working in this space. We are proud of the role we’ve played in creating an evidence base, advocating for meaningful public involvement in decisions about data and thinking about trustworthiness in practical ways.
So... It’s over to you! We want teams to take forward the different elements of our work so they can live on elsewhere. This includes our:
- Evidence and research, like the summaries of public attitudes to the use of patient data
- Public facing resources, like the Data Saves Lives animations
- Policy work, like advocating for a trustworthy system for patient data
From Spring next year we’ll be reaching out to teams and organisations directly about taking ownership of some of our key resources. We want you to continue what we’ve started—and we’re looking forward to seeing how you build on our work.
We will still be here for a while...
We’ll be working on our existing projects throughout next year, as well as finding homes for our content. We’re also thinking about how to celebrate the end of the programme, probably around Autumn next year. Keep an eye out for news about that.
In the meantime, get in touch if you have questions at firstname.lastname@example.org.