Q&A with…Dr Valérian Turbé and Erin Manning

They told us how a patient and public involvement bursary from the BRC helped i-sense organise its first patient focused workshop. The workshop invited people living with HIV to provide insight on a potential i-sense project.

The funding was awarded to i-sense postdoctoral research associate Dr Harriet Gliddon, who also organised, ran and managed the workshop and research project in focus. Harriet developed the first i-sense patient and public engagement group following on from this workshop, which is now managed by Val and Erin.

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Can you first tell us what your research is about?

VT and EM: i-sense researchers have looked at the feasibility of developing a device that people living with HIV could use to rapidly self-test their viral load – a measure of the amount of HIV in the blood.

People living with HIV have a viral load test on a regular basis – typically every six months or annually – to monitor their condition. Treatment decisions are guided by the test results.

At the moment, patients need to visit the clinic to have this test – but we are looking at whether developing a device that people can use at home would be feasible and acceptable. The option to self-test at home can save both the individual and healthcare time, and make testing more accessible.

A key part of our self-test would be linking it up with a mobile phone app – so people can keep track of their test results and share them with healthcare professionals.

How did you involve patients in this work?

VT and EM: We worked with Positive East – an HIV charity in East London – to recruit 18 people through their network to attend our Positively Managing HIV Workshop to seek their views on the self-test.

All 18 were living with HIV and had been on treatment for at least two years – so they were used to having their viral load tested.

We asked people about the care they currently receive, whether they would want to monitor their viral load tests themselves and if so, how often they would like to self-test.

We asked them whether they would be comfortable using a mobile phone app, and to let us know any concerns they would have about the test and the app.

The grant from the BRC covered almost half of all costs for the workshop.

What did you find?

VT and EM: Most participants were interested in monitoring their viral load themselves, with 78% saying this would be empowering. Most received a viral load test every six months, and 72% were happy with how often they had these tests.

We found high levels of digital literacy – 83% owned a smartphone – and over half (61%) said they already used some form of healthcare technology, including websites (e.g. NHS Choices), social media, texts to and from their doctor and online communities. This suggests they may be happy to use a digital app to monitor their viral load.

However, 67% of people said they would worry about how accurate the test would be, and many had concerns about data security, and who their HIV status could be shared with. These will be key considerations in taking the project forward.

Feedback from our event was incredibly positive – all attendees said they felt they had the chance to contribute their views to the research, and 89% rated the event as ‘very good’ or ‘excellent’.

What’s next?

VT and EM: The workshop revealed a number of insights that will be used to guide the development of the test – in particular making sure that the test is appropriate for end-user needs.

In addition, the patient group will continue as a platform for i-sense researchers to involve people in other HIV research at i-sense and across UCL – this will benefit research and provide an ongoing opportunity for patients to be involved in research.

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The BRC patient and public involvement (PPI) bursary is currently open for applications until 27 October 2019. More details.

Find out more about i-sense research on their website.