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.

"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"

Information governance

Confidentiality of the personal and clinical details of people with HIV is of paramount importance. Any data collection processes that involve people with HIV must deliver the appropriate level of confidentiality that is required by law, ethics and policy. At all levels, identifiable or potentially identifiable data must be held securely, with access strictly restricted to trained data managers and clinical/epidemiological/research staff, and in compliance with information governance standards and the relevant legislation.

People with HIV should expect that their health record will be used, in confidence, by a health professional or by a person who has the same duty of confidentiality. Only data that are useful for surveillance, commissioning, monitoring of care or research will be collected and the information will not be used for any other purpose.


"Data collection should be voluntary and anonymous as I am worried that someone will find out about my health condition. I want to be in control of this"

Evidence-based assessment and interventions

Evidence-based practice is defined as decision-making based on sound research evidence that is combined with individual practitioner expertise. It also takes into consideration the needs of the individual service user.


"My involvement in surveys is crucial; it gives me the confidence to speak with my doctor about my treatment decisions and care"

The goal of evidence-based practice is to improve outcomes for the service user, enhance quality of care, and provide some standardisation of treatment and other interventions. Using evidence-based interventions also improves cost-effectiveness, by avoiding expenditure on those which do not work or work less well than others.

"Data collection has improved my knowledge of HIV and I feel that, over time, this has improved my adherence to my medication"

Changing risk behaviours

Successful HIV prevention depends on changing risk behaviours. This includes increasing condom use and reducing the numbers of sex partners among sexually active people, as well as reducing needle-sharing behaviour among injecting drug users, to name only a few.

As HIV continues to spread in many countries, prevention efforts are increasing to promote the changes in behaviour mentioned. Every country needs information to guide the design of appropriate prevention programmes and to monitor whether these efforts are successful.

Over several years behavioural surveillance surveys (BSS) have been shown to make an important and useful contribution to informing the national response to HIV. These surveys use reliable methods to track HIV risk behaviours over time as part of an integrated surveillance system which monitors various aspects of the epidemic. They are especially useful in providing information on behaviours among subpopulations who may be difficult to reach through traditional household surveys, but who may be at especially high risk for contracting or passing on HIV, such as sex workers and their clients, men who have sex with men and injecting drug users.


"I feel surveys should be incentivised. We have valuable experience and knowledge of our care and we should be rewarded for this. Often surveys are long and take time to complete. I understand the voluntary sector may not have the funding for this, but the pharmaceutical industry do. If patients do not want to accept an incentive, then a donation could be made to a charity of their choice. This funding could focus on establishing peer support groups and testing within the community"

Poll data

The community was asked for views on patient engagement when collecting data. There were 102 respondents between 25 September and 26 October 2015, with views collected via online hosting at and social networking sites. Thanks to the members of the community for sharing their views.

The next poll examines HIV awareness and testing. Click here to take part.

About the author:

David Rowlands is the director of, delivering effective healthcare communications to enable people with HIV and/or hepatitis C (HCV) to become better engaged with their treatment and care.

Drawing on his established networks and collaboration with partners, David is able to bring healthcare together, by engaging patients & organisations, healthcare providers, physicians, stakeholders & policy makers.

Contact David via Email:, , Twitter: @DR_TweetUK

Read more from David Rowlands:

The effects of smoking on people with HIV

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2 November, 2015