HIV data collection and patients’ views Over the past few years there has been a greater focus on data collection and how it is used to improve care. David Rowlands examines the views of the HIV community on this topic, based on responses to his latest online poll.
Service providers routinely collect data relating to the care received by people living with HIV. These data are critical to the provision of patient care since they are used to inform the public health response to HIV, including evaluation of prevention initiatives, auditing the quality of care received by patients, informing the commissioning of services, contributing to the development of clinical guidelines and driving clinical research. Given its importance, people with HIV should expect to be informed of opportunities to take part in ethically approved research that is relevant to their health and care. “Research will help us to better understand the challenges and difficulties people experience now, as well as the things that help and support them in the future” “I completed many surveys online and in the clinic, but I never get to see the survey findings. I feel organisations have a responsibility to feed data back to patients in a format which they understand and is user friendly. If data is not shared with patients this may have a negative impact on their care.”
Public health surveillance
Data collected locally is sent securely to the Health Protection Agency (HPA) and its successor Public Health England (PHE) or Health Protection Scotland for surveillance purposes. These data are used to monitor the number of people newly diagnosed
and living with HIV, to monitor access to HIV care and treatment, and to target prevention initiatives. “I have recently been diagnosed. I feel more research needs to explore people’s experiences of receiving their diagnoses, their feelings about living with hepatitis, how other people have treated them and the support they have received”
Local and national audits
Clinical audit is a key driver for improving the quality of care available for people with HIV as it checks whether current best practice is being followed and helps identify where improvements should be made if there are shortfalls in the delivery of care. Audits may be completed at the national, regional or local level. “Age isn’t a barrier to involvement; patients in their 60s engage in surveys at the same rate as those in their 30s, 40s, and 50s” “Often I see online the same people are sharing and completing surveys. Is data collected really a true reflection of the diverse community we are?”
Commissioning and provision of services
The commissioning of services is reliant upon timely and high quality data collected at the provider level. These data are used to ensure that services are adequately funded and provide a high quality of care.
David Rowlands
“Information from the research will be used to help people to understand more about the experiences of young people who are living with HIV” Creating new knowledge and finding the most appropriate ways to use existing knowledge are vital for progress in the HIV field. Research and innovation underpin the understanding and response to HIV, the way that treatments are provided to people living with HIV, and the improvement of prevention, treatment, and outcomes for people living with HIV. “All HIV services should have procedures to alert people to appropriate opportunities for them to join in research programmes and clinical trials if they so wish”