POSITIVE OUTCOMES: Improving Quality

Health

POSITIVE OUTCOMES: Improving Quality

“I know that people bounce around from health professional to health professional desperately hoping that someone is going to recognize they have got a problem and it never really being addressed. I think actually having something like that in a questionnaire saying, ‘We recognize this is a problem for people living with HIV, are you struggling with that? Maybe we can look at whether we need to signpost you to somebody.’” HIV Professional

People living with HIV have a high burden of mental health, social and spiritual concerns, physical symptoms, and poorer health-related quality of life than the general population. People with HIV feel that routine clinical appointments do not generally address the things that matter to them, with implications for their engagement and outcomes of treatment and care. In collaboration with BHIVA and the UK-CAB we have developed POSITIVE OUTCOMES, a simple tool which can quickly identify what matters to people living with HIV and so enable care that is centred on the individual.

This project will implement POSITIVE OUTCOMES into routine clinical care in five HIV clinics in the UK and US, with the goal to improve care and services at both the individual patient and service levels. The impact on outcomes will be tested in annual quality improvement cycles and people living with HIV and clinicians will have the opportunity to share their views on the quality improvement mechanisms, impact and areas for further refinement.

Following implementation at demonstration sites, freely available international manuals on implementation of the POSITIVE OUTCOMES quality improvement programme will be developed and disseminated.

“I think that a lot of my anxiety has stemmed from trying to deal with the HIV and feeling closed off and the stigma. It also brings low self-esteem sometimes, and things like that, and it does affect you.” Person living with HIV

“To be quite honest, I'd like them to have more time to talk to me about what I'm feeling, because they don't have it… It's affected my life terrible. Terrible.” Person living with HIV

Aims

The aim of this project is to develop a patient-centred quality improvement programme using POSITIVE OUTCOMES to promote patient-centeredness in HIV care. The project will determine feasibility, and optimal implementation methods and data usage in five demonstration sites in England and the USA. Based on this, a framework for international adoption will be produced.

To develop a quality improvement team within each of our three demonstration sites and identify site-specific challenges and potential solutions (including IT) for PROM implementation.
To develop an evidence-based Decision Support Tool (DST) specifying clinical responses to real-time PROM data from PLWH that are feasible within local resources, a PROM training programme for clinicians and a PLWH “mentor” for patients in each site
Hold a quality improvement launch meeting to train on POSITIVE OUTCOMES and DST implementation.  
Implement the Positive Outcomes PROM in three demonstration sites 
Test impact on outcomes using annual quality improvement cycles at facility level
Determine stakeholder (PLWH, clinician) views on the quality improvement mechanisms, impact and areas for further refinement.  
Develop and disseminate a national manual on implementation of the POSITIVE OUTCOMES quality improvement programme.

“You really forget, after you hear your results your anxiety just sort of goes zoom, you know, and then exhaustion takes over and you don't want to face any more. I think if it's imposed upon you, like on a questionnaire saying, “Right well we've dealt with that. Okay, let's have a little look at what else is going on. How is your mobility? How is your sleeping pattern? How is your diet? Do you need to see the dietician? Do you need to see PE?” I've had to do all of those things on my own. I have had to ask different departments.” Person living with HIV

Patient and Public Involvement and Engagement

Patient and public engagement underpins the POSITIVE OUTCOMES measure; this project is the culmination of five years’ collaborative working to enhance the person-centredness of care and directly influence care delivery real-time for people living with HIV.

Through an initial community consultation and engagement programme, the importance and potential role of outcome measurement led to a report by BHIVA and UK-CAB that set out the principles and goals of this work, and directly influenced the development of the PROM.

UK-CAB will give support through the project Steering Group, membership on the local clinic champions team for this project to promote engagement with other service users, promotion of the work at community level, and data interpretation and dissemination.

“The single tool… needs to relate to people at different stages of the disease, it needs to be important for them at whatever stage of the disease they are.” HIV Commissioner