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BHIVA PROMS / PREMS PROJECT

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.

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BHIVA PROMS / PREMS PROJECT

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  1. BHIVA PROMS / PREMS PROJECT A Community Consultation

  2. 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.

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

  4. How do we intend to do this • For your health - by creating a ‘PROM’ patient reported outcome measure (hOw is yOurbOdy = 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

  5. 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.

  6. 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…

  7. 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?

  8. 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?

  9. 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?

  10. 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?

  11. 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

  12. 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: http://www.bhiva.org/ClinicalGuidelines.aspx • The NICE Patient Experience GuidelinesAvailable at: http://publications.nice.org.uk/patient-experience-in-adult-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 conditionAvailable at: https://www.gov.uk/government/policies/improving-quality-of-life-for-people-with-long-term-conditions

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