Why treatment information is important for people with HIV

NAM has always believed that information is essential in the fight against HIV. We have, for 25 years, published information that enables people living with HIV to take action and control. It’s our mission.

• We know information enables people to understand their condition and treatment.

• We know it supports the doctor-patient dialogue.

• We know it empowers people to participate in decisions about their treatment and care.

• We know it helps people adhere to their treatment.

But don’t take our word for it….

The British HIV Association (BHIVA) also knows it. 

That’s why their NICE-accredited Guidelines for the treatment of HIV-1-positive adults with antiretroviral therapy 2012 recommend that, to ensure patient involvement in decision making: ‘provision of treatment-support resources should include in-house, independent and community information providers and peer-support resources’

BHIVA’s Standards of care for people living with HIV, recommends that people living with HIV should have ‘access to services which promote self-management of HIV including: provision of practical and empowering support and information about HIV, treatment, healthy living with HIV, diet and lifestyle, and optimisation of general health.’

NHS England’s HIV Clinical Reference Group also knows it.

Indeed two of the key performance indicators the CRG has proposed that your HIV service will be measured by (listed in the CRG’s draft ‘Quality Dashboard’) are [1] the ‘proportion of patients confirming that they have been given access to information on their condition’ and [2] the ‘proportion of patients confirming that they have been supported to self manage’.

The CRG’s draft Service Specification for Specialised HIV Services for Adults describes the objectives for these, including: ensuring ‘adults with HIV are central to decisions about the management of their condition, reflected in their care plan and including relevant support to promote self management’. The specification goes on to describe one of the ‘service elements’ as ‘treatment support including patient education, delivered in partnership with community or voluntary providers’. 

And the Government knows it. 

The NHS White Paper, Equity & excellence: liberating the NHS, cites international evidence which shows that ‘involving patients in their care and treatment improves their health outcomes, boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment. It can also bring significant reductions in cost, as highlighted in the Wanless Report, and in evidence from various programmes to improve the management of long-term conditions.’ Our view is that patients need good-quality information in order to be effectively involved in their care and treatment.

Finally, perhaps there is no group which knows it better than the Patient Information Forum.   They have recently published an excellent document that makes a clear, evidence-based case for patient information: Making the case for information: the evidence for investing in high quality health information for patients and the public.