Introducing HIV Outcomes UK

HIV Outcomes UK hosted a successful symposium at the British HIV Association (BHIVA) Conference which showcased the initiative’s work to end inequalities and improve the HRQoL of people living with HIV. At the BHIVA conference, HIV Outcomes UK also had a stall and presented on the work of the initiative at the UK Community Advisory Board meeting.

HIV Outcomes UK provided evidence to the All Party Parliamentary Group on HIV & AIDS inquiry, focusing on priority areas and recommendations for national authorities to improveHRQoL of people living with HIV.

HIV Outcomes convened an in-person Steering Group which reviewed the work of the initiative and co-developed the next work plan to begin from the summer.

HIV Outcomes UK partnered with Fast Track Cymru to organise a successful workshop on the “Living Well with HIV” priority of the HIV Action Plan for Wales, exploring strategies to delivery against the HIV Action Plan and ensure all communities can live well with HIV. Insights from the workshop will inform HIV Outcomes UK’s forthcoming report on ‘Living well with HIV in Wales’.

HIV Outcomes UK organised a workshop exploring mental health, wellbeing and HIV in Scotland. The event included presentations from leading community advocates and clinicians, and is informing the development of an evidence report on the state of mental health provision for people living with HIV in Scotland.

HIV Outcomes UK convened a Steering Group meeting to follow up from their successful parliamentary event, discuss approaches to monitoring quality of life to inform their position ahead of a UK Government consultation, and discuss their work in Scotland.

HIV Outcomes UK partnered with the UK All Party Parliamentary Group on HIV and AIDS to host a successful parliamentary event exploring ending inequalities and how Parliament can achieve a good quality of life for all. The event, chaired by Florence Eshalomi MP, brought together key leaders in the UK’s HIV response, explored the urgent action needed to support all living with HIV to have a good health-related quality of life. A summary of the event can be read here.

HIV Outcomes UK presented the work of the initiative to over 70 clinicians and community stakeholders at the South London HIV Network.

Following publication of the Core20PLUS5 briefing, HIV Outcomes UK continued its engagement with National Health Service commissioners on their strategies to address inequalities and promote well-being for those living with HIV. This included participation at the NHS England and the Royal Society of Medicines ‘Tackling Inequalities’ conference.

HIV Outcomes UK Steering Group members played a key in securing the Government commitment to expand routine opt-out HIV testing to hospital emergency departments in all 32 areas of high HIV prevalence in England. HIV Outcomes plans to support the expansion of the programme and work to ensure that those who are diagnosed have access to local, culturally relevant support services, including peer support.

HIV Outcomes UK had an in-person Steering Group meeting which advanced plans for 2024 including a series of roundtable events, webinars and a UK parliamentary event in Q1 2024.

HIV Outcomes UK published a briefing exploring synergies between the HIV response and Core20PLUS5, the NHS’ approach to addressing health inequalities. HSJ, news outlet for healthcare leaders, published an opinion-piece on the report. Briefing was shared at events around World AIDS Day, including at National AIDS Trust & One Voice Network’s roundtable with the UNAIDS Executive Director.

HIV Outcomes UK welcomed Adam Williams and Dr Carol Emerson to the Steering Group. Adam Williams is a researcher based at Cardiff University working closely with civil society led HIV initiatives in Wales. Carol is an experienced HIV clinician from the Belfast Health and Social Care Trust. Adam and Carol will collaborate with the Secretariat to advance its work in Northern Ireland.  

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.