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Last month, the UK Government published its long-awaited 10-Year Health Plan, with one of its three key shifts being the move from ‘analogue to digital’. It is encouraging that the Plan reaffirms the government’s commitment to ending new HIV transmissions in England by 2030 – a goal that is within reach but unachievable as things stand. If designed and implemented well, digital transformation could play an important role in tackling growing inequalities and accelerate progress in the HIV response.
HIV Outcomes UK is committed to improving data and confidentiality practices across the NHS. Supporting people to live well with HIV means enabling joined-up care, ensuring accessible information, and data-sharing systems that uphold privacy and reduce stigma.
At the heart of the Government’s digital shift is the introduction of a Single Electronic Patient Record and a significantly upgraded NHS App. But delivering on the commitments of the 10-Year Health Plan will take more than policy commitments and software updates.
For people living with HIV – who too often face fragmented services and the impacts of stigma – this is a critical moment. As this article explores, digital transformation holds real potential for strengthening the UK’s HIV response but only if the right safeguards, investment, and co-production with communities are put in place.
One record, better care?
Despite the very high satisfaction among people living with HIV with their HIV care, health outcomes and experiences can be hindered by fragmented data systems and siloed services.
With two-thirds of people living with HIV in the UK having at least one additional long-term condition alongside HIV, coordinated care is essential. Yet incompatibility between systems can prevent HIV clinicians and nurses, GPs, mental health providers, and peer support workers from easily sharing information and coordinating. It can also mean that people living with HIV can’t readily access comprehensive information about their own health, hindering potential for greater self-management and shared decision-making.
So the Plan’s proposal for a Single Patient Record holds lots of potential. By bringing together all of a patient’s medical records into one place, the Plan states that ‘clinicians will be able to securely access it in order to deliver higher quality care’ and it ‘will make sure patients get seamless care no matter where they are in the NHS’.
While the Government’s ambition to roll out Single Patient Records is welcome, this will be a long-term project and there is a pressing need to improve the current use of electronic patient record (EPR) systems. Although 90% of NHS trusts now have an EPR in place, only 10–30% are using more advanced functionalities such as integrated prescriptions or record sharing with other hospitals. Strengthening how existing systems are used will be essential to realising the full benefits of digital transformation.
The Plan also sets out longer-term ambitions for the Single Patient Record to include a personalised account of health – drawing on lifestyle, demographic, and genomic data – to tailor NHS services and support individual behaviour change. In HIV care, this could offer real value, particularly in supporting people who face barriers in engaging with their HIV care or whose wider needs – such as housing instability or substance use – impact their health. However, these tools carry risks if implemented without transparency, ethical safeguards, and meaningful community involvement.
Unlocking the NHS App’s potential for the HIV response
The Plan envisions the NHS App as the ‘front door’ to the entire NHS, offering access to health records, managing medicines and appointments, communicating with health teams and drafting care plans.
Enhanced features are in development such as:
- “My Specialist” (allowing self-referrals to specialist care)
- “My Consult” (allowing patients to connect with a clinician)
- “My Medicines” (flagging drug interactions)
- “My Care” (allowing patients to review their care plan, management appointments and access their health records)
- “My Companion” (helping people articulate their health needs and preferences).
These features have the potential to significantly improve care for people living with HIV. However, at present, most cannot even view their clinic appointments on the NHS App, let alone book appointments or manage aspects of their HIV care. For the NHS App to meet the needs of people living with HIV, in line with the individual preferences of people for their own care, HIV care and associated health metrics should be fully integrated into the app.
The NHS App also offers the potential to increase HIV testing and improve access to prevention tools. An increasing number of people are choosing postal HIV testing over in-person services (where available), yet universal access to postal testing in England is currently limited to National HIV Testing Week. I’m pleased that funding has been secured to launch HomeTest, a new programme aiming to pilotHIV home testing via the NHS App. With HomeTest aiming to co-create a scalable, sustainable home testing model, there’s lots of potential to also use the NHS App to scale-up access to wider STI testing.
Consent and control aren’t optional extras
The Plan rightly acknowledges the public’s desire that patient records and digital health tools must have a rigorous approach to privacy and security. These concerns were echoed in a recent discussion with the National AIDS Trust’s Community Advisory Group. It is therefore encouraging that the Plan commits to giving people ‘real control’ over their Single Patient Record, including through a redesign of the current opt-out system.
Models like Estonia’s system that is referenced in the Plan, where patients can both restrict access and see who has viewed their record offers a blueprint for the UK’s health system.
Given that one in seven people living with HIV report avoiding healthcare services due to their HIV status, many may have heightened concerns about sharing health information or utilising digital tools. To align with the Government’s commitment to give patients control over their health data, and the best practice cited in Estonia, the NHS should explore the feasibility of a system of safeguards which allow patients to decide what information is visible and to whom. Without these protections, digital records risk deterring people from care rather than encouraging engagement.
But new systems and safeguards alone won’t build trust. People also need confidence that the healthcare professionals providing their care understand HIV, uphold confidentiality, and treat them with respect. It is therefore important that the planned training for the NHS workforce on using digital health tools goes alongside training on HIV stigma, confidentiality and culturally competent care
The need for such training is underscored by survey data from the pilot phase of the HIV Confident charter mark which showed that among NHS staff there are misconceptions about transmissions with 23% mistakenly believing that HIV could be passed on by spitting and 14% saying that they would feel at risk if they were looking after someone living with HIV. Fears of transmission lead to discriminatory practices as indicated by 37% of respondents who agreed that staff should take extra precautions when caring for a patient living with HIV.
Inclusion by design – not just as an afterthought
It is welcome that the Plan states that the Government ‘will involve patient groups and patient organisations in the development and testing of new App functionality’ and recognises the need for engagement with those previously excluded by other NHS services.
Collaboration and co-design with NHS patients and healthcare professionals should be at the heart of the design and roll-out of the single EPR and expanded use of the NHS App. For people living with HIV, meaningful co-design is particularly important – both to address potential concerns around data sharing and confidentiality, and to ensure the NHS can fully realise the opportunities digital transformation offers for improving HIV care. As the Government takes forward its plans to engage patient groups in the development of the NHS App, it is important that people living with HIV are meaningfully consulted.
It is also important that non-digital routes to care remain open and of high quality. Without this, there is a real risk of creating a two-tier system where digitally confident users can navigate the NHS with ease, while others are left behind. Digital exclusion could be a particular concern for people living with HIV in the UK given that half of this demographic report not always having enough money to meet their basic needs. And some people living with HIV, including migrants living in shared accommodation may not have access to telephone or online appointments, or the digital literacy required to use online systems securely and confidently.
Whilst it’s welcome that the Plan sets out how the NHS will continue partnerships to set people up on the NHS App, the forthcoming ‘Digital Inclusion Action Plan’ must ensure that socially excluded groups can benefit from digital health tools. This includes older people living with HIV, who may not feel confident navigating digital platforms, as well as those facing digital poverty or low digital literacy. Strategies should include stronger NHS partnerships with HIV voluntary sector organisations to support people living with HIV set up and use forthcoming digital tools.
What this all means for HIV care and what comes next
We are at a pivotal moment in the UK’s HIV response. While we have a real opportunity to end new HIV transmissions, we’re not on track, and growing inequalities mean that some communities are being left behind. If done well, digital transformation could play a vital role in addressing key challenges in HIV care – from improving care coordination to supporting self-management – and help ensure that we reach the 2030 targets.
That’s why HIV Outcomes UK is launching a new project, developing briefings on digital health and HIV care over the coming year. These briefings will be taken directly to NHS leaders and government decision-makers, offering evidence-based recommendations to shape the design and delivery of digital tools. Grounded in research and lived experience, each briefing will explore critical challenges and opportunities, including:
- How to unlock opportunities that single patient records could offer to the UK’s HIV response and care for people living with HIV
- How we can remove existing barriers to linking patient data and improve care coordination
- What people living with HIV actually want from the NHS App – and how to make it inclusive and trusted
HIV must not be an afterthought in digital reform. It’s a condition that intersects with multiple experiences and inequalities and requires joined-up, stigma-free, person-centred care. If we get digital transformation right for HIV, it could set the standard for the rest of the NHS. But if we get it wrong, we risk repeating the very failures we aim to fix. To meet the needs of people living with HIV and end new transmissions, now is the time to build something better, together.
To learn more or get involved, please visit our website or contact [email protected]
Document reference: UKI-UNB-1541
Date of Preparation: August 2025