Nothing about us without us: ‘patients-as-partners’ model shows promise for improving HIV care

In the Caribbean, partnerships have been formed between healthcare providers and people in HIV care – and services have improved as a result. 

What is the research about? 

A new approach to improving HIV care. 

The approach has been trialled in Barbados, Jamaica, Suriname and Trinidad and Tobago. Quality improvement (QI) teams were formed that consisted of healthcare providers and community representatives. The community representatives were people with HIV and/or from marginalised groups, such as sex workers and gay men. The QI teams suggested small-scale changes to improve HIV care, which were tested in healthcare facilities.  

Why is this research important? 

Making sure that the people who use healthcare services are involved in efforts to improve those services is an effective strategy. But it is often difficult for patients' views to be valued. 

What did they find out? 

The initiative increased understanding and empathy between healthcare providers and people with HIV. This led to HIV services being changed in ways that better catered for patients’ needs. It also helped to reduce HIV stigma and discrimination within facilities.  

Some of the changes improved patient confidentiality and safety. For instance, names were removed from patient sign-in sheets and people with HIV no longer had to wait in places where they could be harassed by other patients. Other changes made services more convenient, for example by extending pharmacy hours. 

Most QI teams met at least monthly and also communicated by phone, email or WhatsApp. Before the initiative, healthcare providers rarely got or used patient feedback. 

Community representative helped find areas for improvement. They also gave feedback on ideas, assisted with data collection and created content for training sessions. Some acted as presenters or trainers in training sessions. Healthcare providers described the presentations as ‘eye-opening’, particularly testimonies from marginalised groups.  

The initiative also helped community representatives view things from providers’ perspectives. This reduced the ‘us versus them’ divide between patients and providers. 

Taking part made community representatives feel motivated to improve HIV care for others. It also strengthened their skills and knowledge. One community representative said: “I feel so empowered … now we have our role, we have a say, and they actually listen …” 

What does this mean for HIV services? 

It shows how useful it is to make sure people with HIV have a say in their care. Not doing this is a missed opportunity for improving the quality of HIV services.  

For initiatives like these to work, there is a need to get buy-in from government officials and healthcare management. 

It is also essential that people with HIV are viewed as equal partners to providers. This means showing providers that people with HIV hold expert knowledge about their own health and what it is like to receive healthcare services. By testing out small changes and seeing results, providers are likely to become more and more convinced of the value of patients’ views.  

It is also important to develop a good working relationship between patients and providers. This can be done by setting common goals and communicating regularly. Practical things that might stop patients taking part also need to be considered, such as work clashes and expenses to cover transport and childcare costs.