Introducing HIV Outcomes UK

Members

HIV Outcomes UK consists of the following members:

  • Co-Chair, Dr Nicoletta Policek, UK Community Advisory Board
  • Co-Chair Professor Caroline Sabin, University College London
  • Professor Jane Anderson, HIV Outcomes Europe
  • Dr Grace Bottoni, NHS England & Lewisham HIV GP Champion
  • Amanda Williams, Children’s HIV Association (CHIVA)
  • Dr Carol Emerson, Belfast Health and Social Care Trust
  • Adam Williams, Cardiff University
  • Paul Bates, Terrence Higgins Trust
  • Professor Yvonne Gilleece, British HIV Association
  • Ian Jackson, NHS England
  • Darren Knight, George House Trust
  • Veronique Martin, UK Health Security Agency
  • Sylvia Nicholson, ViiV
  • Denis Onyango, One Voice Network
  • Peter Shand, Gilead
  • Daniel Fluskey, National AIDS Trust
  • Grant Sugden, Waverley Care
  • Dr Laura Waters, HIV Clinical Reference Group

Activities & Milestones

HIV Outcomes UK’s vision is for the 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.

We are working to achieve this by deploying an effective working coalition of HIV experts 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.

HIV Outcomes is currently working in four key areas: HIV care engagement, integration and coordination; stigma as a barrier to care; mental health; and information, data and confidentiality.

For more information, please see the vision document for HIV Outcomes UK.


2023
  • December 2023

    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.

  • November 2023

    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.

  • October 2023

    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.  

  • September 2023

    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.

  • August 2023

    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.

  • June 2023

    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

  • April 2023

    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.

2021
  • June 2021

    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.

Contact

James Cole, Senior Policy, Research & Influencing Manager, National AIDS Trust

Email:  james.cole@nat.org.uk

Number: +44 7814 6755

This initiative is enabled by sponsorship provided by Gilead Sciences and ViiV Healthcare.

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