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 UKCAB. 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?
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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 HIVrelated care
Clinicians and commissioners will be asked to
use the feedback to improve services.
What do we want from you?
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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
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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: http://www.bhiva.org/ClinicalGuidelines.aspx
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The NICE Patient Experience Guidelines
Available at: http://publications.nice.org.uk/patient-experience-in-adultnhs-services-improving-the-experience-of-care-for-people-using-adultcg138
NHS England's guidance on care for people living with a long-term
condition
Available at:
https://www.gov.uk/government/policies/improving-quality-of-life-forpeople-with-long-term-conditions