Introducing HIV Outcomes UK

HIV Outcomes UK published its vision document, calling for HRQoL of people living with HIV to be embedded as an equal outcome in clinical, academic and policy decision-making across all four nations of the UK.
The document sets out that HIV Outcomes will seek to deliver policy projects responding to the needs of people living with HIV, make sure HRQoL is a priority in UK-wide policy making on HIV and raise general awareness about HRQoL in HIV.

HIV Outcomes UK Steering Committee member presented at Scottish Clinical needs meeting on HIV Outcomes. This meeting brought together clinicians, Government representatives, communities and the voluntary sector. National AIDS Trust presented on HIV Outcomes UK and discussed ideas and collaboration for a roundtable in Scotland in January 2024. This planned roundtable will consider current context against HIV Outcomes UK vision in Scotland, identify key issues and opportunities and prioritise actions for future collaborations.

HIV Outcomes UK held its second Steering Committee meeting, which agreed on HIV Outcomes UK workplan. The workplan focuses on four key areas:
– HIV care engagement, integration and coordination
– Stigma as a barrier to care
– Mental health
– Information, data and confidentiality

HIV Outcomes UK Steering Committee was set up and its first meeting was held. The appointed Steering Committee represents a coalition of HIV experts, and the group was appointed to support HIV Outcomes UK’s work to identify, prioritise and secure policy, practice and evidence changes necessary to improve the quality of life for people living with HIV in the UK.
Informed by a background paper on HRQoL produced by the National AIDS Trust for this meeting, the Steering Committee discussed opportunities, barriers and started work to develop HIV Outcomes UK workplan on HRQoL.

A roundtable meeting was held on HIV and Health Related Quality of Life in the UK in June 2021. Chaired by Professor Jane Anderson, the meeting brought together key stakeholders in the UK’s HIV response area. The roundtable explored various themes, including the patient perspective; knowledge, research, data and metrics; and potential next steps towards greater health-related quality of life. A meeting report for the June roundtable can be downloaded here.

Following a series of two exploratory roundtable meetings the same year, the decision was taken to set up HIV Outcomes UK. 
The following ‘next steps’ were decided at the 2021 meetings:
– Undertake a stocktake on health-related quality of life (HRQoL) work in the UK, including a stakeholder map
– Develop an evaluation framework which could support the assessment of third sector organisation contributions
– Develop consensus on what HRQoL means (and how it can be measured) and how the HRQoL agenda can be taken forward, using the current policy opportunities
– Develop an action plan for the mainstreaming of HRQoL in UK HIV policy and practice
The establishment of HIV Outcomes UK programme is a response to the last bullet.