In December 2018, Understanding Patient Data held an event with people from across the patient data community to celebrate the work we’ve done together, and to look at what’s next. UPD’s initial period of funding is coming to an end, so it seemed an appropriate time to reflect, evaluate and thank everyone.   

You can read Nicola’s reflections and our evaluation describing what has been a busy and fulfilling two years.  

During the event, we also gathered information on what else is going on around patient data, which you can read about here

New key areas for UPD 

At the event, we outlined where UPD would focus its energies given the rapidly evolving patient data landscape. Going forward, our key areas will be: 

  • Public engagement and attitudes: conducting, commissioning or collating research on public, patient and clinician attitudes to data use, access and management. 

  • Developing new resources: updating and creating new resources to help support conversations about patient data use, including around the use of new data-driven technologies. 

  • Partnerships and communities: expanding UPD’s support for those working on patient data issues locally and regionally, connecting people and organisations.   

  • Relevant policy and regulation development: providing a hub of expertise for national and regional policy-makers on health data, particularly on public and patient attitudes. This may be a smaller function for UPD as our main focus will be on the first three areas. 

UPD’s overarching mission will be: to make patient data use visible, understandable and trustworthy. 

A new funding model 

Having looked at various funding models and options for continuing UPD, our Steering Committee supports our proposal to embed UPD into the Priority Area on Data for Science and Health currently in development at Wellcome, being led by Nicola Perrin.  

To maintain UPD’s independence, we’ll continue to seek funding and in-house support from other organisations. We appreciate this may seem ambiguous at the moment as the decision on whether or not the Priority Area will go ahead will be taken at the end of April 2019.  

In the meantime, we are developing more a detailed proposal on what this relationship will look like.   

While the practicalities are not yet crystal clear, the plan to embed into the Priority Area is an exciting opportunity to place UPD on a more secure footing with increased financial resource for up to five years.  

Immediate next projects 

We’re developing a toolkit to put all our resources in one place for ease of use. As ever, we’re keen to make them widely applicable so that people can adapt them for their own communities and contexts – but with enough detail to enable consistency. During the event, we received some great feedback on the early iteration.  

UPD recently wrote to the Secretary of State for Health and Social Care, in conjunction with the AMRC, Academy of Medical Sciences and Wellcome. We urged that substantial public engagement was needed to ensure fair benefits for the NHS and patients resulting from data-driven technologies that rely on patient data for their development, testing and evaluation. We’re keen to ensure that the views of public, patients and clinicians are central to how these policies develop.  

Transparency is a real buzz word in patient data, but it’s not always clear what it means in practice. We’re exploring the different ways that information about data use can be meaningfully transparent and informative, without overwhelming people, and what people expect transparency to look like. 

In light of GDPR, our spectrum of identifiability needs an update to clarify the legal boundary between personal and non-personal data. This is a tricky area as the data environment needs to be considered when establishing whether data counts as personal or not. We’re working with the Information Governance Alliance and NHS England to map the terms used in law and information governance policy against the spectrum, to make these clearer. 

In conjunction with the Discovery Programme at the One London Local Health and Care Record Exemplar, we’re testing our resources with communities in North East London to see if they’re accessible and useable for a wider range of audiences. This should provide some useful feedback and raise questions or issues we’ve inevitably missed so far. 

We are working with the Wellcome Public Engagement team and a design agency, Spotless, to explore what helps build people’s confidence in data use, beyond providing accessible information. We’ll report on this in March with the aim of providing further guidance and support to those talking to patients, the public and clinicians about patient data use. 

As ever, our network of partners and supporters are critical to all our work, so we will be dedicating time to developing these relationships – do get in touch if you’d like to work with us on particular areas or projects. 

We wish all of our partners and supporters a happy 2019!