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People living with HIV deserve both excellent healthcare and confidence that their personal information is handled with respect, confidentiality and care. Getting that balance right is not always straightforward. Sharing information can support safer, more joined-up care, but it can also raise concerns about privacy, control and who has access to sensitive information. How HIV information is used affects trust in health services, how well different parts of healthcare work together, and ultimately people’s experiences and outcomes.
Why now?
Healthcare is becoming more connected. Opt-out testing, where an HIV test is included routinely unless people say no, now runs in emergency departments and, increasingly, in general practice, and it is being piloted in other healthcare settings. In emergency departments it has helped many people learn their status and connect, or reconnect, with care.
At the same time, shared care records, the NHS App and closer working between GPs and HIV services are changing how information moves. The HIV Action Plan for England 2025 to 2030 commits to expanding opt-out testing in emergency departments and general practice, and to closer working with primary care.
So while new innovations and interventions are transforming HIV testing and care, the ways HIV information is handled were developed several decades ago. They prioritised confidentiality, and did so for good reasons, to protect people from discrimination, stigma, and harms that come from widespread sharing of an individuals’ HIV status. That protection still matters. But as care changes, it is right to ask how well these assumptions and guidance on data fit the ways and places in which care is now delivered. None of this works well unless people can trust how their information is used.
Treatment has transformed life with HIV. Most people on effective treatment can expect a long life, and people whose viral load stays undetectable on treatment cannot pass HIV on to their sexual partners: undetectable equals untransmittable, or U=U. Joined-up information matters because two-thirds of people with HIV also live with another long-term condition. Good care increasingly depends on collaboration between GPs, HIV services and other partners, as HIV Outcomes UK’s recent discussion paper on collaborative care frameworks set out.
When the clinicians caring for someone know about their HIV treatment, they can avoid harmful drug interactions, manage other conditions safely and act quickly in an emergency. As the NHS joins up its records, people living with HIV should receive the same benefits of safe, coordinated care as everyone else, without weakening protection from stigma or discrimination. They should not be left behind.
Different experiences, different views
The questions this raises are being discussed in many separate places: in professional societies, among the people who design health records, in community groups, NHS services, and among people living with HIV themselves. Practice varies from place to place, and guidance has not always kept pace with where testing now happens. Many people do not know how their information is shared, or what choices they have about it.
For many people, sharing already works well. Nearly nine in ten people living with HIV who are registered with a GP have shared their status with them, and many have good experiences of joined-up care. For others it is more complicated. HIV has been one of the most stigmatised and discriminated-against health conditions, and those experiences continue today: Positive Voices found that one in seven people living with HIV had worried about being treated differently by healthcare staff.
Many people who have lived with HIV for a long time remember the challenges of more than 20 years ago, when people with HIV were first encouraged to use primary care. Work such as HIV Confident, which the National AIDS Trust leads in partnership with Positively UK is now addressing those challenges in ways that were not available then.
For some, confidentiality is not simply a principle. It is closely connected to dignity, safety and control. For others, sharing information is what makes safe, coordinated care possible. Many people hold both views at once. And some expect and want the benefits that come from data sharing, but would not actively choose to opt-in to data sharing when presented with the choice.
Views differ among professionals too, and between places where HIV is common and places where it is rare. With so much changed since the 1990s, the balance between the benefits of sharing information and its risks may look different today, though not in the same way for everyone. These are not simple questions, and they deserve careful discussion rather than assumptions from either side.
Bringing the conversation together
That is why the National AIDS Trust is convening UK-wide work to bring those conversations together. We want to make them visible, make sense of them together, and allow a shared view to emerge across the system, with people living with HIV shaping it from the start. Our aim is not necessarily unanimity. It is to identify areas of agreement, understand where disagreement remains, and give a clear signal that can inform the guidance, systems and policy being shaped now. That includes how people are told about the ways their information is used, and the choices open to them.
Starting by listening
This work does not begin with predetermined answers. It begins with listening, and with a recognition that there are legitimate concerns, experiences and perspectives on all sides. It builds on decades of work, much of it led by people living with HIV and community organisations who have long championed confidentiality and the right to be treated without stigma, alongside BHIVA, BASHH and the FSRH, the specialists who design health records, and London’s data and digital programmes. We do not take it lightly, and we recognise that even opening this conversation can feel uncomfortable, but the issue is too important to leave in the “too difficult” box. This is not about weakening protections. It is about creating a space where experiences, concerns and aspirations can be heard openly and respectfully.
What happens next?
Our first step is to bring together what is already known: the evidence, the guidance and the work already under way. A steering group drawn from across the UK, with a strong voice for people living with HIV, will meet in the new year to shape how the work is done. Health systems, law and guidance differ across England, Scotland, Wales and Northern Ireland, and the work will reflect that.
Join the conversation
- If you are living with HIV, or work with people who are, we want to hear what you’ve got to say
- If you know of evidence, guidance or work we should be aware of, please tell us
- And if you want to be part of future workshops, events, or opportunities to share your views then let us know!
Email [email protected] to register your interest and we will be in touch about how to share your views and take part.
We are particularly keen to hear from communities and voices that are often missing from policy discussions, including people living in areas where HIV is less common and people who have experienced their status being shared without consent. We will make sure there are safe, supported ways to take part, so nobody needs to share more than they want to. We will report back on what we hear and how it shapes the work.
The future use of HIV data should not be determined by technology, policy specialists or health systems alone. It must be shaped by the people whose lives it affects. If we want health services that both protect people’s rights and deliver the best possible care, we need to be willing to ask difficult questions together. We are delighted to be co-chairing this work. Whether you register your interest, point us to work we should know about, or simply share this with your networks, we hope you will be part of the conversation.
Rachel Hill-Tout and Garry Brough, co-chairs
Rachel is a GP and HIV and sexual health consultant, and NHS England’s National Clinical Lead for opt-out testing for HIV and other blood-borne viruses in emergency departments; she also works on HIV testing in general practice. Garry is Chair of UK-CAB, the UK Community Advisory Board, and has been living with HIV for 36 years.
This project has been partially funded through a community grant from ViiV Healthcare.