BHIVA PROMS / PREMS PROJECT A Community Consultation

Who we are BHIVA – the British HIV Association – is an organisation of doctors who provide specialist HIV care. For this project, BHIVA has set up a steering group together with the HIV treatment activists network UK- CAB. Its members are clinicians, people living with HIV, and other experts. The steering group wants to consult the HIV community more widely.

What are we trying to do? We are creating two processes to measure: 1. Health improvement for people living with HIV how your health improves and how this relates to the care you receive 2. Experience of care provided to people living with HIV how you feel about how your care is provided

How do we intend to do this For your health - by creating a ‘PROM’ patient reported outcome measure (hOw is yOur bOdy = prOm): – a questionnaire that will help identify how your care affects your health (outcome) For your experience - by creating a 'PREM‘ patient reported ExpEriEncE measure = prEm: – a questionnaire that will allow you to give your experience about how your care is delivered

How will these PROMS/PREMS be used? People living with HIV will be invited to complete one of each annually… The responses will be anonymously collected and analysed… The results will be used to inform and provide feedback to those involved in delivering HIV- related care Clinicians and commissioners will be asked to use the feedback to improve services.

What do we want from you? We want to hear what matters to you. We have a few questions that we would like you to consider, and respond to. Your responses to the questions will be used to help us ensure the PROM and PREM properly reflect what people living with HIV want…

The Questions: 1 We want to know what matters to people living with HIV about their care. What should we ask? Here are some suggestions to consider – Does your HIV clinic offer you the care you need? What about other health services you use? – Do staff treat you with dignity and respect? – Has poor communication between different services affected your care? eg between your GP and HIV Doctor – Are you given as much information as you need? – Has medicine been prescribed that wasn’t right for you?

The Questions: 2 Where would people living with HIV like to be asked these questions? Here are some things to consider – Would it be best to ask people at their regular clinical appointment? – Would involving voluntary and support organisations make people feel more comfortable? – Would people be willing to answer them online?

The Questions: 3 What else should we be asking or thinking about? For example: – Are there any issues relating to gender, race, sexuality, age or disability that we should be considering? – How should people living with HIV be given feedback from the responses? eg You said we did… – Is there anything glaringly obvious that we’ve missed?

The Questions: 4 Overall, what are your views about what we’re doing? – Do you think this is a good idea for people living with HIV? – Why, or why not?

Timelines The consultation will run from September 2013 until December 2013 We will then produce a draft PROM and PREM These will be open to further consultation in spring 2014 The whole project will be completed by the end of 2014

Some more reading on HIV treatment and care... The PROM and the PREM will be underpinned by: The BHIVA Standards of Care for Adult living with HIV Available at: The NICE Patient Experience Guidelines Available at: nhs-services-improving-the-experience-of-care-for-people-using-adult- cg138 NHS England's guidance on care for people living with a long-term condition Available at: people-with-long-term-conditions