Are existing apps and online health resources appropriate for people seeking information about HIV testing and care?

Tuesday 18th July 2017

 

We live in a world where mobile and online resources are increasingly becoming the first point of contact for people seeking health information.  

Published in the ACM Library in July, research by members of i-sense at UCL and Glasgow Caledonian University (GCU) looks into widely available online resources that provide information, advice and care for sexually transmitted infections (STIs) such as HIV. The research also provides recommendations for those developing apps and online resources on these subjects.

Postdoctoral Research Associate from i-sense at UCL, Dr Aneesha Singh, says, “This is an area that is largely unexplored in Human-Computer Interaction (HCI) research. We conducted this research as a first step to improve the experiences of, and options available to people accessing HIV resources.”

In 2015, Public Health England reported that more than 101,000 people were living with HIV in the UK and more than 6,000 people were infected with HIV that year alone.

Clinical Senior Research Associate and Honorary Consultant in Sexual Health and HIV at UCL, Dr Jo Gibbs, says “There is an important role for apps and online interventions, particularly for prevention, early diagnosis, referral to care and ongoing management [of HIV]. 

"They can provide an important link between technology, a person testing for or already diagnosed with HIV, and healthcare professionals.”

Regardless of their potential, the research found that existing technology interventions have a one-size-fits all approach and do not support the breadth and complexity of HIV-related support needs.

With more than 680 HIV related smartphone apps available for iPhones and Android, it was identified that barriers for adoption by users included:

  • issues of privacy
  • lack of well-sourced and reliable information
  • unclear healthcare pathways
  • basic functionality issues

It was also identified that some popular prank apps and risk-calculator apps were scaremongering and playing on people’s fears.   

The functionality landscape of native apps for HIV

Out of the 69 mobile (native) apps which focused on HIV testing, most lacked key information which is given routinely in sexual health clinics; only 15 per cent featured information on safer sex, around one in five (19%) gave information on medication to prevent HIV such as Post-Exposure Prophylaxis (PEP) and Pre-Exposure Prophylaxis (PrEP), and one app mentioned availability of home-testing.

Dr Singh says, “The functionality of available apps differs widely and many fail to meet the basic health care needs of people testing for or living with HIV.  Notably few apps utilised the full range of features that native apps are capable of offering such as personalisation and providing tailored resources.”

The research also identified that trustworthiness of smartphone apps was questionable with almost two thirds having unclear sources of information and poor links to healthcare professionals and medical evidence.  

How do web-apps compare?

Web-apps appeared to be more reliable sources with 97 per cent of the 28 tested apps provided by known healthcare providers, charities and high street pharmacies.

Compared to mobile apps, the majority (86%) mentioned safe sex, one in five (21%) mentioned home-testing, however, none provided information on medication management.

For both mobile and web apps, there was a notable gap in resources for emotional and psychological support.

How can mobile apps be more effective in managing health?  

Access to information online brings new opportunities and challenges to providing health information and services.

Today, more than 7 billion people are mobile phone users; 3 billion have Internet access and 72 per cent search for health information online. Research also shows that the increase in availability and use of mobile and web dating apps has caused an increase in incidence of HIV and STIs.

Director of UCL Institute of Digital Health, Professor Ann Blandford, believes that, if designed well, technology has the potential to provide appropriate support and interventions for sexual health and HIV.

“Well-designed health apps can be used as tools to provide virtual support such as symptom checking, monitoring of side effects, and provision of advice and information in real-time,” says Professor Blandford.

Technology can also play a key role in prevention of STIs by providing information on transmission and safe sex, and informing partners after a person is diagnosed.

There is a need for creating well signposted and inclusive online resources targeted at various aspects along a complex healthcare pathway from prevention to treatment and care.

Dr Singh explains that the needs of users differ from person to person and can change over time from pre-test to post-test.

“User needs are always changing, for example, someone who is worried about having acquired HIV may need to find a testing location or PEP whereas someone who has HIV may want information on medication and side effects. Hence, a one size fits all approach to HIV apps cannot address the full range of functionality needed.”

 

Top-line division of potential user needs for pre and post-test.

 

The authors highlighted apps that propagate the stigma attached to HIV or were scaremongering and potentially harmful.  This is exacerbated by a lack of regulation of such apps and limitations with the app stores search functions (with no way of filtering the apps).

The research also identified issues with privacy, password protection, and use and storage of personal data, which are critical to design of trustworthy healthcare apps regardless of functionality.

Research such as this is a significant opportunity to bring together the strengths of HCI, with relevant clinical expertise to improve healthcare technologies.

Working collaboratively with i-sense

The paper links closely with i-sense project ‘i-sense HIV Online Pathway’ or ‘iSHOP,’ which is developing online clinical care pathways that guide people from their HIV test into specialist clinical care (if positive) and secondary prevention for HIV (if negative).

iSHOP is also investigating how HIV self-testing devices can best link through to care and integrate with sexual health clinics. Understanding the existing market and end-user needs is an important part of this process.

This builds on the award-winning work previously conducted by Dr Jo Gibbs, Professor Pam Sonnenberg, and Professor Claudia Estcourt on developing an online chlamydia pathway as part of an e-sexual health clinic (Estcourt et al 2017 in The Lancet Public Health).

Professor of Sexual Health and HIV at Glasgow Caledonian University, Claudia Estcourt says, “Within i-sense, our vision is to develop an integrated eSexual Health clinic in which people can find accurate information, make informed choices about testing for HIV and other STIs, self-test, access clinical care online or seamlessly link into face-to-face services. This study shows how much such a system is needed.”